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National resources for specific disabilities.

This directory includes national groups and organizations that can serve as resources for parents and professionals seeking information and support regarding specific disabilities and conditions. Please note that information on some specific disabilities may also be available from Federal and Federally-Funded Information Resources, Parent to Parent Programs, or certain National Information and Advocacy Resources (see Table of Contents for page numbers). In addition, Matching Resources, at the end of this directory, may also be useful.

CROSS-REFERENCING

Categories have been cross-referenced where appropriate.

Many conditions are known by more than one name. Readers are directed to "See" other relevant category names where resources are also listed. Under CHROMOSOME 4P-, for example, readers are referred to WOLF-HIRSCHHORN SYNDROME.

Some specific disabilities are not covered by a specific national organization. These conditions may be cross-referenced to a broader category that includes organizations that can provide helpful resources. For example, the metabolic condition ARGINASE DEFICIENCY is cross-referenced to UREA CYCLE DISORDERS. In some cases, the reader may be directed to a similar (but not identical) condition, when groups for that condition have indicated the ability and willingness to provide appropriate information and support. For example, 45,X SYNDROME is cross-referenced to TURNER'S SYNDROME and HYPOPIGMENTATION.

In cases where resources are available for both a general category of disability (for example, VISUAL IMPAIRMENT), as well as specific conditions within that general category (for example, ALBINISM; GLAUCOMA; MACULAR DISEASES; RETINITIS PIGMENTOSA; RETINOBLASTOMA; SEPTO-OPTIC DYSPLASIA; and USHER SYNDROME), cross-referencing goes in two directions. Under VISUAL IMPAIRMENTS for example, readers are informed of the types of visual impairments for which specific resources exist; and under each specific type of visual impairment, readers are referred back to the more general category. The only exception to this type of cross-referencing is the general category MENTAL RETARDATION, which is not used as a cross-referencing term.

In cases where one specific condition usually includes other conditions, but those other conditions do not necessarily include the first condition cross-referencing goes in one direction only. For example, under LAURENCE-MOON-BARDET-BIEDL SYNDROME (LMBBS), readers are directed to "See also" KIDNEY DISORDERS and RETINITIS PIGMENTOSA, though neither of these conditions refer back to LMBBS. This is because LMBBS typically includes kidney complications and retinitis pigmentosa, but a primary diagnosis of either one of these conditions does not typically include LMBBS.

Cross-referencing assistance came from the organizations listed in this directory, from the National Organization for Rare Disorders (NORD) and their Resource Guide (fourth ed., 2000, available for $53.95 including S&H through the EXCEPTIONAL PARENT Library [800] 535-1910; Item Number NO418DI), and from the Physician's Guide to Rare Diseases (second ed., 1995, edited by Jess G. Thoene, MD, also available for $45.00 including S&H from the EP Library as Item' Number DP1311OD).

USING THIS DIRECTORY

A description of services provided by individual groups follows each listing in this directory. Numbers correspond to items listed in the Key to Services, which appears on every other page. When available, e-mail addresses and World Wide Web sites have been included. E-mail addresses are indicated by the symbol. Web sites are listed with the standard http://before each. (Unless otherwise indicated, all telephone numbers are for voice only.)

1-[beta]-HYDROXYLASE

DEFICIENCY

See: Adrenal Disorders

17-20-DESMOLASE

DEFICIENCY

See: Adrenal Disorders

17-ALPHA-HYDROXYLASE

DEFICIENCY

See: Adrenal Disorders

17-HYDROXYLASE DEFICIENCY

See: Adrenal Disorders

21-HYDROXYLASE DEFICIENCY

See: Adrenal Disorders

3-[beta]-HYDROXYSTEROID

DEHYDROGENASE DEFICIENCY

See: Adrenal Disorders

45, X SYNDROME

See: Turner's Syndrome;

Albinism & Hypopigmentation

47,XXY; 47,XXY; 47,XXX

SYNDROMES

See: Klinefelter Syndrome

A-BETA-LIPOPROTEINEMIA

See: Tay-Sachs Disease

ABDOMINAL MIGRAINE

See: Cyclic Vomiting Syndrome

ACHONDROPLASIA

See: Growth Disorders

ACID MALTASE DEFICIENCY

See also: Glycogen Storage

Diseases; Pompe Disease

(AMDA) Acid Maltase

Deficiency Association

PO Box 700248

San Antonio, TX 78270-0248

(210) 494-6144

(210) 490-7161 (fax)

tianrama@aol.com

http://www.amda-pompe.org

1,2,6,8,9

ACIDEMIA, ISOVALERIC (IVA)

See: Acidemia, Organic

ACIDEMIA, METHYLMALONIC

See: Acidemia, Organic

ACIDEMIA, ORGANIC

See also: Fatty Oxidation

Disorders; Maple Syrup Urine

Disease; Metabolic Disorders

Organic Acidemia Association

13210 35th Ave. N.

Plymouth, MN 55441

(763) 559-1797

(763) 694-0017 (fax)

oaanews@aol.com

http://www.oaanews.org

1,2,3,6,7,8

ACIDEMIA, PROPIONIC

See: Acidemia, Organic

ACOUSTIC NEUROMA

See also: Balance Disorders &

Dizziness; Brain Tumors;

Hearing Impairments;

Neurofibromatosis; Vestibular

Disorders

Acoustic Neuroma Association

600 Peachtree Pkwy., Ste. 108

Cumming, GA 30041

(770) 205-8211

(770) 205-0239 (fax)

anausa@aol.com

http://www.anausa.org

1,2,4,5,6

Acoustic Neuroma Association

of Canada

PO Box 369

Edmonton, AB CAN T5J 2J6

(800) 561-2622 (voice/TDD,

Canada only)

(780) 928-3384(voice/TDD)

anac@compusmart.ab.ca

http://www.anac.ca

1,2,3,5,6; French materials

ACQUIRED IMMUNE

DEFICIENCY SYNDROME

See: AIDS

ACROCEPHALOSYNDACTYLY,

TYPE I

See: Apert Syndrome

ACROFACIAL DYSOSTOSIS,

NAGER TYPE

See: Nager & Miller Syndromes

ACROMEGALY

See: Multiple Endocrine

Neoplasia I; Pituitary

Disorders/Tumors

ACTH DEFICIENCY

See: Adrenal Disorders

ACYL-COA DEHYDROGENASE

DEFICIENCY, MEDIUM-CHAIN

See: Fatty Oxidation Disorder

ADDISON DISEASE

See: Adrenal Disorders

ADIPOGENITAL-RETINITIS

PIGMENTOSA-POLYDACTYLY

SYNDROME

See: Laurence-Moon-Bardet-Biedl

Syndrome

ADRENAL CORTEX MALE

PSEUDOHERMAPHRODITISM

See: Adrenal Disorders

ADRENAL DISORDERS

National Adrenal Diseases

Foundation

505 Northern Blvd.

Great Neck, NY 11021

(516) 487-4992

NADFMAIL@aol.com

http://medhelp.org/www/nadf

1,2,3,4,5

ADRENOCORTICOTROPIC

HORMONE DEFICIENCY

See: Adrenal Disorders;

Pituitary Disorders/Tumors

ADRENOGENITAL SYNDROME

See: Adrenal Disorders

ADRENOLEUKODYSTROPHY

See: Leukodystrophy; Tay-Sachs

Disease

AGENESlS OF COMMISSURA

MAGNA CEREBRI

See: Agenesis of the Corpus

Callosum

AGENESIS OF THE CORPUS

CALLOSUM

ACC Network

5749 Merrill Hall, Rm. 118

University of Maine

Orono, ME 04469-5749

(207) 581-3119

(207) 581-3120 (fax)

um-acc@maine.edu

1,2,3,5,9

AGYRIA

See: Lissencephaly

AICARDI SYNDROME

See also: Agenesis of the

Corpus Callosum; Epilepsy;

Visual Impairments

Aicardi Syndrome Awareness and

Support Group/Network

29 Delavan Ave.

Toronto, ON CAN M5P 1T2

(416) 481-4095

asasn@sympatico.ca

http://www3.sympatico.ca/asasn

2,3,4,7,9

Aicardi Syndrome Newsletter

1510 Polo Fields Ct.

Louisville, KY 40245

(502) 244-9152(telephone/fax)

AICNews@aol.com

http://www.Aicardi.com

1,2,3,5,6,7,8

AIDS

CDC National STD and AIDS

Hotlines

(800) 227-8922

(800) 342-2437

(800) 344-7432 (Spanish)

(800) 243-7889 (TDD)

hivnet@ashastd.org

http://www.ashastd.org

http://www.iwannaknow.org

2,4; Spanish materials

National Pediatric & Family HIV

Resource Center

30 Bergen St,-ADMC-4

Newark, NJ 07107

(800) 362-0071

(973) 972-0410

(973) 972-0399 (fax)

ortegaes@umdnj.eou

http://www.pedhivaid.org

1,2,4,7; Spanish/Creole materials

ALAGILLE SYNDROME

See also: Heart Disorders; Liver

Disorders

Alagille Syndrome Alliance

10630 SW Garden Park PI.

Tigard, OR 97223

(503) 639-6217

alagille@teleport.com

http://www.alagille.org

1,2,3,4,6,

ALANINURIA

See: Lactic Acidosis; Acidemia,

Organic

ALBINISM &

HYPOPIGMENTATION

See also: Visual Impairments

NOAH (National Organization for

Albinism and Hypopigmentation)

PO Box 959

E. Hampstead, NH 03826-0959

(800) 473-2310

(603) 887-6049 (phone/fax)

webmaster@albinism.org

http://www.albinism.org/

1,2,3,4,5,6,8,9; Spanish

materials

ALBRIGHT SYNDROME

See: Growth Disorders

ALGONEURODYSTROPHY

See: Reflex Sympathetic

Dystrophy Syndrome

ALLERGY

See: Asthma & Allergy; Food

Allergy; Latex Allergy

ALLERGY, FOOD

See: Food Allergy

ALLERGY, LATEX

See: Latex Allergy

ALOPECIA AREATA NATIONAL

National Alopecia Areata

Foundation

PO Box 150760

San Rafael, CA 94915-0760

(415) 456-4644

(415) 456-4274 (fax)

info@naaf.org

http://www.naaf.org

1,2,3,4,5,6,7,8,9; Spanish

materials

ALOPECIA UNIVERSALA-ONYCHODYSTROPHY-TOTAL

VITILIGO

See: Ectodermal Dysplasias;

Vitiligo

ALOPECIA-ANOSMIA-DEAFNESS-HYPOGONADISM

See: Ectodermal Dysplasias

ALOPECIA-ONYCHODYSPLASIA-HYPOHIDROSIS

See: Ectodermal Dysplasias

ALPHA-1-ANTITRYPSIN (AAT)

DEFICIENCY

See also: Liver Disorders; Lung

Diseases

Alpha-1 Antirypsis Deficiency

National Association

8120 Penn Ave. South, Ste. 549

Minneapolis, MN 55431

(800) 521-3025

(952) 703-9975

(952) 703-9977 (fax)

info@alpha1.org

http://www.alpha1.org

1,2,3,4,5,6,7,9

ALPHA-GALACTOSIDASE

DEFICIENCY

See: Fabry Disease

ALPHA THALASSEMIA

MENTAL RETARDATION

SYNDROME, X-LINKED

Alpha Thalassemia Mental

Retardation Syndrome (ATR-X)

Support Group

http://www.groups.yahoo.com/group/atr-x

c/o International Rare Disease

Support Network (IRDSN)

David Hughes,

President/Founder

1437 Cool Springs Dr,

Mesquite, TX USA 74181

(469) 726-0380

ATRX@rarediseasesupport.org

supportgroups@home.com

irdsn@rarediseasesupport.org

http://www.raredisorders.com

ALPORT SYNDROME

See: Hearing Impairments;

Kidney Diseases, Hereditary;

Vision Impairments

ALSTROM SYNDROME

See: Diabetes Mellitus; Hearing

Impairments; Kidney Disorders;

Retinitis Pigmentosa; Visual

Impairments

ALTERNATING HEMIPLEGIA

See: Hemiplegia, Alternating

AMELOCEREBROHYPHOHIDRO

TIC SYNDROME

See: Ectodermal Dysplasias

AMELOONYCHOHY-PHOHIDROTIC

DYSPLASIA

See: Ectodermal Dysplasias

AMNIOTIC BANDS

See: Craniofacial Disorders

AMPUTATION

See also: Limb Disorders

American Amputee Foundation

PO Box 250218

Little Rock, AR 72225

(501) 666-2523

(501) 666-8367 (fax)

2,3,4,5,7,9

Amputee Coalition of America

900 E. Hill Ave., Ste. 285

Knoxville, TN 37915-2568

(888) AMP-KNOW (267-5669)

(865) 524-8772

(865) 525-7917 (fax)

acainfo@amputeecoalition.org

http://www.amputeecoalition.org

1, (newsletter for support grp.

leaders) 2,3,5, (nat'l support

groups) 6,7; Spanish materials

National Amputation Foundation

38-40 Church St.

Malvern, NY 11565

(516) 887-3600

(516) 887-3667 (fax)

amps76@aol.com

http://www.nationalamputation.org

1,2,3,4,7,9

AMSTERDAM DWARF

SYNDROME OF DE LANGE

See: Cornelia de Lange

Syndrome

AMYLO-1, 6-GLUCOSIDASE

DEFICIENCY

See: Glycogen Storage

Diseases; Muscular Dystrophy

AMYLOPECTINOSIS

See: Glycogen Storage

Diseases

AMYOPLASIA, CONGENITA

See: Arthrogryposis Multiplex

Congenita

ANAL ATRESIA

See: Anorectal Malformations

ANAL STENOSIS

See: Anorectal Malformations

ANDERSEN DISEASE

See: Glycogen Storage

Diseases

ANDERSON-FABRY DISEASE

See: Fabry Disease

ANDERSON-WARBURG

SYNDROME

See: Norrie Disease

ANEMIA, APLASTIC

See: Anemia, Fanconi; Bone

Marrow Transplant

Applastic Anemia and

Myelodysplasia Association of

Canada

22 Aikenhead Rd.

Etobicoke, ON CAN M9R 2Z3

(416) 235-0468

(519) 235-1756 (fax)

http://www.aplastic.ualberta.ca

1,2,4,7,8,9

Aplastic Anemia MDS

International Foundation, Inc.

PO Box 613

Annapolis, MD 21404-0613

(800) 747-2820

(410) 867-0240 (fax)

aamdsoffice@aol.com

http://www.aamds.org

1,2,3,5,5,8,9

ANEMIA AREGENERATIVE

See: Anemia, Aplastic

ANEMIA COOLEY

See: Cooley Anemia

ANEMIA, DIAMOND

BLACKFAN

See also: Anemia Aplastic,

Anemia Fanconi, Autoimmune

Disorders

Diamond Blackfan Anemia

Registry

1 Gustave Levy Pl.

Box 1208

New York, NY 10029

(212) 241-6031

(212) 360-6921 (fax)

ANEMIA ERYTHROBLASTOTIC

See: Cooley Anemia

ANEMIA, FANCONI

See also: Anemia, Aplastic;

Heart Disorders; Kidney

Disorders; Leukemia

Fanconi Anemia Research

Fund/Support Group

(800) 828-4891 (family support

only)

(541) 687-4658

(541) 687-0548 (fax)

info@fancani.org

http://www.fanconi.org

1,2,3,4,5,6,7,8,9; Spanish/

Portugese/French materials

ANEMIA HEMOLYTIC

See: Cooley Anemia

ANEMIA HYPOPLASTIC

See: Anemia, Aplastic

ANEMIA MEDITERRANEAN

See: Cooley Anemia

ANEMIA, REFRACTORY

See: Anemia, Aplastic

ANEMIA TARGET CELL

See: Cooley Anemia

ANEMIA, TOXIC PARALYTIC

See: Anemia, Aplastic

ANGELMAN SYNDROME

See also: Epilepsy

Angelman Syndrome Foundation

414 Plaza Dr., Ste. 209

Westmont, IL 60559-5507

(800) 432-6435

(630) 734-9267

(630) 655-0391 (fax)

info@angelman.org

http://www.angelman.org

1,2,3,4,5,6,7,8,9; Internet mail

list-subscribe by sending e-mail

to: listserv@ucsd.edu

Canadian Angelman

Syndrome Society

PO Box 37

Priddis, AB CAN, TO0 1WO

(403) 931-2415 (voice/fax)

cass@cadvision.com

http://rigel.phys.ualberta.ca/cass

1,2,3,5,5,9; French materials

ANGIO-OSTEOHYPEETROPHY

SYNDROME

See: Klippel-Trenaunay

Syndrome

ANGIOKERATOMA CORPORIS

DIFFUSUM

See: Fabry Disease

ANGIOMATOSSIS RETINA

See: Von Hippel-Lindau

Syndrome

ANIRIDIA

See also: Visual Impairments,

WAGR Syndrome

The Canadian Foundation for

Aniridia Research

3780 Verdun Ave., Ste. 2

Montreal, QUE CAN H4G 1K6

(888) 650-5555 (Can&USA)

(514) 845-5555

(514) 845-5004(FAX)

info@generations.net

http://www.aniridia.org

ANKYLOSING SPONDYLITIS,

JUVENILE

See: Arthritis

ANOPHTHALMIA

See also: Visual Impairments

International Children's

Anophthalmia Network

5501 Old York Rd.

Philadelphia, PA 19141

(800) 580-4226

(215) 456-2356 (fax)

aemcgenetics2@hotmail.com

http://www.ioi.com/ca

1,2,3,4,6,9

ANORECTAL MALFORMATIONS

See also: Intestinal Pseudo-Obstruction

Syndrome

Puli-Thru Network

4 Woody Ln.

Westport, CT 06880

(203) 221-7350

(203) 221-9212 (fax)

pullthrunw@aol.com

http://www.pullthrough.org

1,2,3,4,9

ANOREXIA NERVOSA

Includes bulimia nervosa and

binge-eating disorder

American Anorexia Bulimia

Association, Inc.

http://www.aabainc.org

2,3,4,5

National Association of Anorexia

Nervosa and Related Disorders

PO Box 7

Highland Park, IL 60035

(847) 831-3438

(847) 433-4632 (fax)

anad20@aol.com

http://www.anad.org

2,3,4,5,6,7

APECED SYNDROME

See: Ectodermal Dysplasia;

Hypoparathyroidism

APERT SYNDROME

See also: Craniofacial

Disorders

Apert Syndrome Pen Pal Network

PO Box 115

Providence, RI 02901

(401) 454-4849

2,3,

APHASIA, ACQUIRED

See also: Brain Injury; Stroke

National Aphasia Association

156 Fifth Ave., Ste. 707

New York, NY 10010

(800) 922-4622

(212) 989-7777 (fax)

naa@aphasia.org

http://www.aphasia.org

1,2,3,4,5

APLASTIC ANEMIA

See: Anemia, Aplastic

APNEA, INFANTILE

See: Apnea, Sleep

APNEA, SLEEP

American Sleep Apnea

Association

1424 K St. NW Ste. 302

Washington, DC 20005

(202) 293-3656

asaa@sleepapnea.org

http://sleepapnea.or

1,2,4

APRAXIA

See also: Learning Disabilities

C.H.E.R.A.B. Foundation, Inc.

(Communication Help, Education,

Research, Apraxia Base Foundation)

Lisa Geng, President,

657 Valley Rd. Box 339

Gillette, NJ 07933

(732) 871-6013

kiddietalk@yahoo.com

http://www.apraxia.cc/

The Childhood Apraxia of

Speech Association

123 Eisele Rd.

Cheswick, PA 15024

(412) 767-6589

(412) 767-0534 (fax)

helpdesk@apraxia.org

http://www.apraxia.org

1,2,4,7

AQUEDUCTAL STENOSIS

See: Hydrocephalus

ARACHNODACTYLY

See: Marfan Syndrome

AREGENERATIVE ANEMIA

See: Anemia, Aplastic

ARGINASE DEFICIENCY

See: Urea Cycle Disorders

ARGININOSUCCINASE

DEFICIENCY

See: Urea Cycle Disorders

ARGININOSUCCINIC ACID

SYNTHETASE DEFICIENCY

See: Urea Cycle Disorders

ARGININOSUCCINIC ACIDURIA

See: Urea Cycle Disorders

ARNOLD CHIARI

MALFORMATION

See also: Syringomyelia

National Institute of

Neurological Disorders (NIH)

31 Center Dr., MSC 2540

Bldg. 31, Rm. 8A16

(800) 352-9424

(301) 496-5751

(301) 402-2186 (fax)

http://www.ninds.nih.gov/

ARTERIOHEPATIC DYSPLASIA

See: Alagille Syndrome

ARTERIOVENOUS

MALFORMATIONS (AVMS)

Seer Epilepsy; Stroke; Vascular

Malformations

ARTHRO-OPTHALMOPATHY

See: Stickler Syndrome

ARTHRITIS

American Juvenile Arthritis

Organization

1330 W. Peachtree St.

Atlanta, GA 30309

(800) 283-7800

(404) 872-7100

(404) 872-9559 (fax)

http://www.arthritis.org

1,2,3,4,5,6,7,8; Spanish

materials

Arthritis Society

#1700, 393 University Ave.

Toronto, ON CAN MSG 1E6

(800) 321-1433(Canada only)

(416) 979-7228

(416) 979-8366 (fax)

nkent@arthritis.ca

http://www.arthritis.ca

2,5,7,8; French materials

National Institute of Arthritis and

Musculoskeletal and Skin

Diseases Information

Clearinghouse (NIAMS)

1 AMS Circle

Bethesda, MD 20892-3675

(301) 495-4484

(877) 22-NIAMS (226-4267)

(free call)

(301) 565-2966 (TDD)

(301) 718-6366 (fax)

http://www./nih.gov/niams/

2,4

ARTHROCHALASIS MULTIPLEX

CONGENITA

See: Ehlers-Danlos Syndrome

ARTHROGRYPOSIS MULTIPLEX

CONGENITA

See also: Growth Disorders;

Muscular Dystrophy

AVENUES: A National Support

Group for Arthrogryposis

Multiplex Congenita

PO Box 5192

Sonora, CA 95370

(209) 928-3688

avenues@sonnet.com

http://www.sonnet.com/avenues

1,2,3

ASCENDING PARAYLSIS

Seer Guillain-Barre Syndrome

ASPERGER SYNDROME

See: Autism

ASTHMA

See: Asthma & Allergy

ASTHMA & ALLERGY

See also: Food Allergy; Latex

Allergy; Lung Diseases

Allergy & Asthma Network

Mothers of Asthmatics,.

2751 Prosperity Ave., Ste. 150

Fairfax, VA 22031-4397

(800) 878-4403 (toll Free)

(703) 6419595 (local)

(703) 573-7794 (fax)

info@aanma.org

http://www.aanma.org

1,2,3,4,7

Asthma and Allergy Foundation

of America

1233 20th Street, NW, Ste. 402

Washington, DC 20036

(800) 727-8462

(202) 466-7643

(202) 466-8940 (fax)

info@aafa.org

http://www.aafa.org

1,2,3,4,5,6,7,8; Spanish

materials

Asthma Society of Canada

130 Bridgeland Ave., Ste. 425

Toronto, ON CAN M6A 1Z4

(416) 787-4050

(416) 787-5807 (fax)

info@asthma.ca

http://www.asthma.ca

1,2,8; patient education

ATAXlA

See also: Friedreich Ataxia

National Ataxia Foundation

2600 Fernbrook Ln., Ste. 119

Minneapolis, MN 55447-4752

(763) 553-0020

(763) 553-0167 (fax)

naf@mr.net

http://www.ataxia.org

1,2,3,4,5,6,8

ATAXIA, FAMILIAL

See: Ataxia; Friedreich Ataxia

ATAXIA, FRIEDREICH

See: Ataxia; Friedreich Ataxia

ATAXIA, SPINOCEREBELLAR

See: Ataxia; Friedreich Ataxia

ATAXIA, TELANGIECTASIA

See also: Ataxia; Autoimmune

Disorders; Cancer; Immune

Disorders; Leukemia

Ataxia Telangiectasia

Children's Project

668 South Military Trail

Deerfield Beach, FL 33442

(800) 543-5728

(954) 481-6611

(954) 725-1153 (fax)

info@atcp.org

http://www.atcp.org

1,2,3,4,6,8,9; Spanish

materials

ATAXIA WITH LACTIC ACIDOSIS II

See: Ataxia; Lactic Acidosis;

Mitochondrial Disorders

ATRESIA

See: Microtia

ATRIAL SEPTAL DEFECTS

See: Heart Disorders

ATROPHIA BULBORUM

HEREDITARIA

See: Norrie Disease

ATTENTION DEFICIT DISORDER

The ADHD Challenge

PO Box 488

West Peabody, MA 01985-7277

(800) 233-2322

1,2,4

Learning Disabilities

AD-IN: Attention Deficit

Information Network

475 Hillside Ave.

Needham, MA 02494-1278

(781) 455-9895

(781) 444-5466 (fax)

adin@gis.net

http://www/.addinfonetwork.org

2,3,4,5,6,9

CHADD-Canada, Inc.-Children

and Adults with Attention Deficit

Disorder

1376 Bank St.

Ottawa ON, CAN K1H 1B3

(613) 731-1209

(613) 257-1563 (fax)

chaddcanad@hotmail.com

http://www.chadd.org

http://www.members.tripod.co

m/~chaddcanada/index.html

1,2,3,5,6,9; Spanish materials

CHADD: Children and Adults

with Attention Deficit

Hyperactivity Disorders

8181 Professional Pt., Ste. 201

Landover, MD 20785

(800) 233-4050

(301) 306-7070

(301) 306-7090 (fax)

national@chadd.org

http://www.chadd.org

1,2,3,5,6,7,9; Spanish

materials

National ADD Association

1788 2nd St., Ste. 200

Highland Pk, IL 60035

(847) 432-ADDA (2332)

http://www.add.org

mail@add.org

1,2,4,6

ATTENUATED ADENOMATOUS

POLYPOSIS COLI

See: Hereditary Colon Cancer

AUDITORY NEUROPATHY

See: Kernicterus

AURICULO-OCULO-VERTEBRAL

SYNDROME

See: Goldenhar Syndrome

AUTISM

See also: Autism and Sensory

Impairments

Asperger Syndrome Coalition of

the United States

PO Box 49267

Jacksonville, FL 32240-9267

(904) 745-6741

info@asc-us.org

http://www.asperger.org

2,3

Autism Independent UK

199/201 Blanford Ave.

Kettering, Northants NN16 9AT

United Kingdom

01536 523274 (phone/fax)

autism@rmplc.co.uk

http://www.autismuk.com

Autism National Committee

PO Box 6175

N. Plymouth, MA 02362-6175

(781) 648-1813 (phone/fax)

http://www.autcom.org

1,2,6,7

Autism Research institute

4182 Adams Ave.

San Diego, CA 92116

(619) 281-7165

(619) 563-6840 (fax)

http://www.autism.com/autism

1,2,4,6,9

Autism Resources

http://www.unc.edu/~cory/autism-info

2,3,4,7,9

Autism Society of America

7910 Woodmont Ave., Ste. 300

Bethesda, MD 20814-3067

(800) 328-8476

(301) 657-0881

(301) 657-0869 (fax)

http://www.autism-society.org/

1,2,5,6,7,8,9

Autism Society of Canada

129 Yorkville Ave., #202

Toronto, ON CAN M5R 1C4

(416) 922-0302

(416) 922-1032 (fax)

1,2,4,7; French materials

Center for Study of Autism

PO Box 4538

Salem, OR 97302

(503) 363-9110 (voice/fax)

sait@teleport.com

http://www.autism.org/

2,6

MAAP Services, Inc.

PO Box 524

Crown Point, IN 46308

(219) 662-1311

(219) 662-0638 (fax)

chart@netnitco.net

http://www.maapservices.org

1,2,5,6

National Autism Hotline/Autism

Services Center

605 Ninth St., Prichard Bldg.

PO Box 507

Huntington, WV 25710-0507

(304) 525-8014

(304) 525-8026 (fax)

2,3,5,7; Spanish/Italian/French

materials

The New Jersey Center for

Outreach and Services for the

Autism Community Inc. (COSAC)

1450 Parkside Ave., Ste. 22

Ewing, NJ 08638

(800) 4-AUTISM (NJ only)

(609) 883-8100

(609) 883-5509 (fax)

information@njcosac.org

http://www.njcosac.org

1,2,4

AUTISM AND SENSORY

IMPAIRMENTS

See also: Hearing Impairments;

Visual Impairments

The Autism Network for Hearing

& Visually Impaired Persons

c/o Dolores and Alan Bartel

7510 Oceanfront Ave.

Virginia Beach, VA 23451

(757) 428-9036

(757) 428-0019 (fax)

3,4,6,7,9

CAN (Cure Autism Now)

5455 Wilshire Blvd., Ste. 715

Los Angeles, CA 90036

(888) 8-AUTISM (288476)

(323) 549-0500

(323) 549-0547 (fax)

info@cureautismnow.org

http://www.canfoundation.org

Indiana Resource Center for

Autism (IRCA)

Indiana Institute on Disability

and Community at Indiana

University Bloomington

2853 E. Tenth St.

Bloomington, IN 47408-2696

(812) 855-6508

(812) 855-9396 (TDD)

(812) 855-9630 (fax)

prattc@indiana.edu

http://www.isdd.indiana.edu/~irca

1,2,4,6

The National Alliance for Autism

Research

99 Wall St.; Research Park

Princeton, NJ 08540

(888) 777-NAAR (5227)

(609) 430-9160

(609) 430-9163 (fax)

naar@naar.org

http://www.naar.org

1,2,8

On-line Asperger's Syndrome

Information and Support (OASIS)

bkirby@udel.edu

http://www.udel.edu/bkirby/asperger

2,3

TEACCH

310 Medical School Wing E

University of North Carolina at

Chapel Hill/CB #7180

Chapel Hill, NC 27599-7180

(919) 966-2174

(919) 966-4127 (fax)

teacch@unc.edu

http://www.teacch.com

2,4,5,6,9

Yale Program for Autism, Prader-Willi

Syndrome, and Williams

Syndrome

Yale Child Study Center

230 S. Frontage Rd.

PO Box 207900

New Haven, CT 06520-7900

(203) 785-7923

(203) 785-7611 (fax)

devdis.clinic@yale.edu

http://info.med.yale.edu/chldstdy.wspws

2,4

AUTOIMMUNE DISORDERS

See also: Immune Disorders/

Vitiligo

American Autoimmune Related

Diseases Association

22100 Gratiot Ave.

East Detroit, MI 48021

(800) 598-4668

(810) 776-3900

(810) 776-3903 (fax)

aarda@aol.com

http://www.aarda.org

1,2,4,5, (Local Contacts) 6,7,8

AUTOIMMUNE MYOCARDITIS

See: Autoimmune Disorders

B12 METABOLISM; INBORN

ERROR OF

See: Cobalamin (B12)

Defiency

BAISCH SYNDROME

See: Ectodermal Dysplasias

BALANCE DISORDERS &

DIZZINESS

See also: Vestibular Disorders

EAR Foundation

1817 Patterson St.

Nashville, TN 37203-2110

(800) 545-4327 (voice/TDD)

(615) 329-7807

(615) 329-7935 (fax)

ear@earfoundation.org

http://www.earfoundation.org

1,2

BANNAYAN, RUVALCABA,

RILEY-SMITH SYNDROME

See: Sotos Syndrome

BARDET-BIEDL SYNDROME

See: Laurence-Moon-Bardet-Biedl

Syndrome

BARTH SYNDROME

See also: Heart Disorders;

Neutropenia; Short Stature

The Barth Syndrome

Foundation, Inc.

PO Box 974

Perry, FL 32348

(850) 223-1128

(402) 421-1926

postmaster@barthsyndrome.org/

http://www.barthsyndrome.org

BATTEN DISEASE

Batten Disease Support and

Research Association

120 Humphries Dr., Ste 2

Reynoldsburg, OH 43068

(800) 448-4570

(740) 927-4298

bdsra1@bdsra.com

http://www.bdsra.org

1,2,3,4,5,6,7,8,9;

Spanish/Portugese/German/

French materials

Batten Disease Support and

Research Association, Canadian

Chapter

c/o Bev Maxim

17 Bell St.

Regina, SK CAN S4S 4B7

(306) 789-9047

(800) 400-8968

bdsra1@bdsra.org

http://www.bdsra.org

1,2,3,4,5,6,7,8,9

National Batten Disease Registry

1050 Forest Hill Rd.

Staten Island, NY 10314-6399

(800) 952-9628

(718) 494-5201

(718) 982-6346 (fax)

edith.docktee@omr.state.ny.us

2,4,5,9; genetic counseling,

diagnostic testing

BATTEN-MAYOU SYNDROME

See: Batten Disease

BATTEN-SPIELMEYER-VOGT

DISEASE

See: Batten Disease

BBB SYNDROME

See: Opitz Syndrome

BUG SYNDROME

See: Opitz Syndrome

BECKER MUSCULAR

DYSTROPHY

See: Muscular Dystrophy

BECKWITH-WIEDEMANN

SYNDROME

Beckwith-Wiedemann Support

Network

2711 Colony Rd.

Ann Arbor, MI 48104

(800) 837-2976 (parents only)

(734) 973-0263

(734) 973-9721 (fax)

A8OOBWSN@aol.com

http://www.beckwithwiedemann.org

1,2,3,4,6

BEDWETTING

See: Incontinence

BEHCET'S DISEASE

See: Autoimmune Disorders

BELL'S PALSY

Bell's Palsy Research Foundation

9121 E. Tanque Verde

Ste. 105-286

Tuscon, AZ 85749

(520) 749-4614

(520) 749-0489 (fax)

BellsPalsy@aol.com

2,3,4,8,9

BENIGN CONGENITAL

HYPOTONIA

See: Spinal Muscular Atrophy

BERGER DISEASE

See: Kidney Disorders

BETA THALASSEMIA MAJOR

See: Cooley Anemia

BEUREN SYNDROME

See: Williams Syndrome

BIOTINIDASE DEFICIENCY

See: Metabolic Disorders

BIRTHMARK

See: Nevi, Giant Congenital

BLEEDING DISORDERS

See: Hemophilia

BLEPHAROPHIMOSIS, PTOSIS,

EPICANTHUS INVERSUS

SYNDROME (BPES)

See also: Craniofacial

Disorders

Blepharophimosis, Ptosis,

Epicanthus Inversus Family

Network

c/o Lynne Schauble

SE 820 Meadow Vale Dr.

Pullman, WA 99163

(509) 332-6628

lschauble@gocougs.wsu.edu

1,2,3,9

BLEPHAROSPASM

See: Dystonia

BLINDNESS

See: Visual Impairments

BLOCH-SULZBERGER

SYNDROME

See: Incontinentia Pigmenti

BLOOM SYNDROME

See: Cancer; Immune

Disorders; Growth Disorders;

Short Stature

BONE MARROW TRANSPLANT

See also: Cancer

Blood & Marrow Transplant

Information Network

2900 Skokie Valley Rd., Ste B

Highland Park, IL 60035

(888) 597-7674

(847) 433-3313

(847) 433-4599 (fax)

help@bmtinfonet.org

http://wwwbmtinfonet.org

1,2,3,9; legal referral for

insurance problems

BONE TUMOR-EPIDERMOID

CYST-POLYPOSIS

See: Colon Cancer, Hereditary/

Polyposis

BONNEVIE-ULRICH SYNDROME

See: Turner Syndrome

BOOK SYNDROME

See: Ectodermal Dysplasias

BOURNEVILLE PRINGLE

SYNDROME

See: Tuberous Sclerosis

BOWEL DYSFUNCTION/

IRRITABLE BOWEL SYNDROME

See also: Gastrointestinal

Disorders

International Foundation for

Functional Gastrointestinal

Disorders (IFFGD)

PO Box 170864

Milwaukee, WI 53217

(888) 964-2001

(414) 964-1799

(414) 964-7176 (fax)

IFFGD@iffgd.org

http://www.iffgd.org

1,2,4,6,7,9

BRACHIAL PLEXUS INJURY

See: Erb Palsy

BRACHMANN-DE LANGE

SYNDROME

See: Cornelia de Lange

Syndrome

BRAIN ATTACK

See: Stroke

BRAIN INJURY

See also: Aphasia, Acquired

Brain Injury Association

105 N. Alfred St.

Alexandria, VA 22314

(800) 444-6443 (family helpline)

(703) 236-6000

(703) 236-6001 (fax)

familyhelpline@biausa.org

http://www.biaUSA.org

1,2,3,4,5,6,7,8; Spanish

materials

Coma Recovery Association, Inc.

807 Carman Avenue

Westbury, NY 11590

(516) 997-1826

(516) 997-1613 (fax)

http://www.comarecovery.org

1,2,3,4,5,6,7

BRAIN STEM

MALFORMATIONS

See: Arnold-Chiari

Malformation; Joubert

Syndrome; Syringomyelia

BRAIN TUMORS

See also: Acoustic Neuroma;

Brain Injury; Cancer; Epilepsy;

Pitutitary Disorders/Tumors;

Von HippeI-Lindau Syndrome

American Brain Tumor

Association

2720 River Rd., Ste. 146

Des Plaines, IL 60018

(800) 886-2282

(847) 827-9910

(847) 827-9918 (fax)

info@abta.org

http://www.abta.org

1,2,3,4,6,7,8; Spanish materials

Brain Tumor Foundation for

Children, Inc.

1835 Savoy Dr., Ste. 316

Atlanta, GA 30341

(770) 458-5554

(770) 458-5467 (fax)

btfc@bellsouth.net

http://www.btfcgainc.org

1,2,3,4,5,6,8; materials

Brain Tumor Foundation of Canada

650 Waterloo St., Ste. 100

London, ON CAN N6B 2R4

(800) 265-5106

(519) 642-7755

(519) 642-7192 (fax)

info@btfc.org

http://www.btfc.org

1,2,3,4,6,8,9; French materials

Brain Tumor Society

124 Watertown St., Ste. 3-H

Watertown, MA 02472

(800) 770-8287

(617) 924-9997

(617) 924-9998 (fax)

info@tbts.org

http://www.tbts.org

1,2,3,6,7,6

Children's Brain Tumor

Foundation

274 Madison Ave., Ste. 1301

New York, NY 10016

(212) 448-9494

(866) CBT-HOPE (228-4673)

(Toll Free)

(212) 448-1022 (fax)

cbtfny@aol.com

http://www.cbtf.org

1,2,3,4; Referrals to national

Resources 6,7,6

Making Headway

Foundation, Inc

115 King St.

Chappaqua, NY 10514-3460

(914) 238-8384,

(914) 238-1693 (fax

mhf@makingheadway.org

http://www.makingheadway.org

1,8; family support group;

one-to-one counseling;

learning assistance Spinal Cord

Tumors, Seminars

National Brain Tumor Foundation

Cathy Clarence

414 Thirteenth St., Ste. 700

Oakland, CA 94612-2603

(800) 934-2873 (info line)

(510) 839-9777

(510) 839-9779 (fax)

nbtf@braintumor.org

http://www.braintumor.org

1,2,3,4,6,8

BRANCHED CHAIN KETONURIA

See: Maple Syrup Urine Disease

BRANCHER DEFICIENCY

See: Glycogen Storage

Diseases

BRANCHIO-OTO-RENAL

SYNDROME

See: Craniofacial Disorders;

Hearing Impairments; Kidney

Disorders

BRITTLE BONE DISEASE

See: Osteogenesis Imperfecta

BROAD THUMB-HALLUX

SYNDROME

See: Rubinstein-Taybi

Syndrome

BURKE SYNDROME

See: Shwachman Syndrome

BURNS

Phoenix Society for

Burn Survivors

1840 Wealthy South East,

Ste. 215

East Grand Rapids, MI 49506

(800) 888-2876

(616) 458-2773

(616) 458-2831 (fax)

Info@phoenix-society.org

http://www.phoenix-society.org

1,2,3,4,5,6,7,9

CALLOSAL AGENESIS

See: Agenesis of the Corpus

Callosum; Aicardi Syndrome

CAMARENA SYNDROME

See: Ectodermal Dysplasias

CAMPTOMELIC SYNDROME

See: Growth Disorders; Short

Stature

CANAVAN DISEASE

See also: Leukodystrophy; Tay-Sachs

Disease

The Canavan Research

Foundation

Fairwood Professional Building

New Fairfield, CT 06812

(203) 746-2436

(203) 746-3205 (Fax)

canavan_research@hotmail.com

http://www.canavan.org/

2,3,7,8,9

CANCER

See also: Bone Marrow

Transplant; Brain Tumors;

Colon Cancer, Hereditary;

Leukemia; Polyposis

American Cancer Society

1599 Clifton Rd. NE

Atlanta, GA 30329-4251

(800) 227-2345

(404) 320-3333

(404) 982-3676 (fax)

http://www.cancer.org

2,4,5,7,8; Spanish materials

Canadian Cancer Society

10 Alcom Ave, Ste. 200

Toronto, ON CAN M4V 3B1

(416) 961-7223

(416) 961-4189 (fax)

Eccs@cancer.ca

http://www.cancer.ca

1,2,3,4,5,7,8; French materials

Candlelighters Childhood Cancer

Foundation

3910 Warner St.

Kensington, MD 20895

(800) 366-2223

(301) 962-3520 (phone/fax)

info@candletighters.org

http://www.candlelighters.org

1,2,3,4,5,7; Survivors of

Childhood Cancer program;

speakers bureau

Childhood Cancer Foundation-Candlelighters

Canada

55 Eglinton Ave E, Ste. 401

Toronto, ON CAN M4P 1G8

(800) 363-1062 (Canada only)

(416) 489-6440

(416) 489-9812 (fax)

staff@candlelighters.ca

http://www.candlelighters.ca

1,2,3,4,5,6,7; 8, French

materials

CANCER; BRAIN

See: Brain Tumors

CANCER; GASTROINTESTINAL

See: Colon Cancer, Hereditary;

Polyposis

CARBAMYL PHOSPHATE

SYNTHETASE (CPS) DEFICIENCY

See: Urea Cycle Disorders

CARDIAC DISORDERS

See: Heart Disorders

CARDIO-FACIO-CUTANEOUS

SYNDROME

See: Heart Disorders;

Ichthyosis

CAREY SYNDROME

See: Ectodermal Dysplasias

CARNITINE DEFICIENCY

SYNDROMES

See also: Acidemia, Organic;

Fatty Oxidation Disorder;

Mitochondrial Disorders;

Muscular Dystrophy

CARNITINE PALMITYL

TRANSFERASE DEFICIENCY

See: Acidemia, Organic; Fatty

Oxidation Disorder;

Mitochondrial Disorders;

Muscular Dystrophy

CARPENTER SYNDROME

See: Craniofacial Disorders

CARTILAGE-HAIR HYPOPLASIA

See: Dwarfism; Growth

Disorders; Short Stature

CARTILAGNOUS

ENCHONDROSES, MULTIPLE

See: Ollier Disease

CAT'S CRY SYNDROME

See: Cri Du Chat Syndrome

CAUSALGIA SYNDROME

See: Reflex Sympathetic

Dystrophy Syndrome

CELIAC DISEASE

See also: Celiac Sprue; Gluten

Intolerance

Canadian Celiac Association

5170 Dixie Road, Suite 204

Mississauga. ON CAN L4W 1E3

(800) 363-7296 (Canada only)

(905) 507-6208

(905) 507-4673 (fax)

cellac@look.ca

http://www.celiac.ca

1,2,4,5,6,7,8; French materials

Celiac Disease Foundation

13251 Ventura Blvd.,

#1 Studio City

Los Angeles, CA 91604-1838

(818) 990-2354

(818) 990-2379 (fax)

cdf@celiac.org

http://www.celiac.org

1,2,3,4.7,9

CELIAC SPRUE

See also: Celiac Disease;

Gluten Intolerance

American Celiac Society

59 Crystal Ave.

West Orange, NJ 07052-3570

(973) 325-8837

(973) 669-8808 (fax)

amerceliacsoc@netscape.net

1,2,4,5,6; speakers bureau

American Celiac Society Dietary

Support Coalition

59 Crystal Ave.

West Orange, NJ 07052

(973) 325-8837

(973) 669-8808 (fax)

bentleac@umdnj.edu

1,2,3,4,5,6,7,8; speakers

bureau

CENTRAL HYPOVENTILATION

SYNDROME, CONGENITAL

See also: Apnea, Sleep;

Intestinal Pseudo-Obstruction

Syndrome; Ventilator Use

Congenital Central

Hypoventilation Syndrome Family

Support Network

71 Maple St.

Oneonta, NY 13820

vanderlaanm@hartwick.edu

1,2,3,6,7,9

CEREBELLAR HYPOPLASIA

See: Joubert Syndrome

CEREBELLAR VERMIS

APLASIA/HYPOPLASIA

See: Joubert Syndrome

CEREBELLO-OCULOCUTANEOUS

TELANGIECTASIA

See: Ataxia Telangiectasia

CEREBELLORETINAL

HEMANGIOBLASTOMATOSIS

See: Von Hippel-Lindau

Syndrome

CEREBRAL GIGANTISM

See: Sotos Syndrome

CEREBRAL PALSY

Ontario Federation for Cerebral

Palsy

1630 Lawrence Ave. W,

Ste. 104

Toronto, ON CAN M6L 1C5

(416) 244-9686

(877) 244-9686 (Toll Free)

(416) 244-6543 (fax)

ofcp@ofcp.on.ca

http://www.ofcp.on.ca

1,2,3,4,6; Provincial

conferences 7. Provincial

Adovcacy efforts ,9; French

materials

United Cerebral Palsy

Associations

1660 L St. NW, Ste. 700

Washington, DC 20036-5602

(800) 872-5827

(202) 776-0406

(202) 973-7197 (TDD)

(202) 776-0414 (fax)

national@ucp.org

http://www.ucp.org

1,2,3,4,5,6,7,8; Spanish

materials, provides direct

services through 130 affiliate

programs

United Cerebral Palsy of NYC

80 Maiden Ln., 8th FI.

New York, NY 10038-4811

(212) 683-6700

infoucp@aol.com

http://www.ucpnyc.org

1,2,3,4,5,6,7,8

CEREBROOCULORENAL

DYSTROPHY

See: Lowe Syndrome

CEREBROSIDE LIPIDOSlS

See: Gaucher Disease

CEREBROTENDINOUS

See: Leukodystrophy; Tay-Sachs

Disease

CHAGAS' DISEASE

See: Autoimmune Disorders

CHALASODERMIA

See: Connective Tissue Disorders

CHANARIN-DORFMAN

SYNDROME

See: Ichthyosis

CHANDS ASSOCIATION

See: Ectodermal Dysplasias

CHARCOT-MARIE-TOOTH

DISEASE

See also: Ataxia; Muscular

Dystrophy; Myelin Disorders

Charcot-Marie-Tooth Association

2700 Chestuct St.

Chester, PA 19013

(800) 606-2682

(610) 499-9264

(610) 499-9267 (fax)

cmtassoc@aol.com

http://www.charcot-marietooth.org

1,2,4,5,7,6,8,9; Spanish

materials

Charcot-Marie-Tooth

International

1 Springbank Dr.

St Catharines, ON CAN L2S 2K1

(905) 687-3630

(905) 687-8753 (fax)

cmtint@vaxxine.com

http://www.cmtint.org

1,2,3,5,7,9; Scholarship

program for members.

CHARGE ASSOCIATION

See also: Heart Disorders;

Hearing Impairments; Velo-Cardio-Facial

Syndrome;

VACTERL Association; Visual

Impairments

CHARGE Syndrome Foundation

2004 Parkade Blvd.

Columbia, MO 65202-3121

(800) 442-7604

(573) 499-4694 (voice/fax)

marion@chargesyndrome.org

http://www.chargesyndrome.org

1,2,3,6,8

CHEDIAK HIGASHI SYNDROME

See: Hermansky-Pudlak

Syndrome

CHEMKE SYNDROME

See: Hydrocephalus;

Lissencephaly

CHIARI MALFORMATION

See: Arnold-Chiari Malformation

CHILD SYNDROME

See: Ichthyosis

CHOLESTATIS WITH

PERIPHERAL PULMONARY

STENOSIS

See: Alagillie Syndrome

CHOLESTERYL ESTER STORAGE

DISEASE

See: Tay-Sachs Disease

CHONDRODYSPLASlA

PUNCTATA

See: Growth Disorders;

Ichthyosis

CHORIONIC VILLUS

SAMPLING, RELATED

DISABILITIES

See also: Limb Disorders

CVS Parent Network

Support Group

15706 Reynolds Ln.

Oak Forest, IL 60452

(815) 462-0708

midsun@aol.com

1,2,3,4,7,9

CHOROIDEREMIA

See: Macular Diseases;

Retinitis Pigmentosa; Visual

Impairments

CHRIST-SIEMENS-TOURAINE

SYNDROME

See: Craniofacial Disorders;

Ectodermal Dysplasias

CHROMOSOME 13 & 18

DISORDERS

See also: Chromosome 18

Disorders

SOFT: Support Organization for

Trisomy 18, 13 and Related

Disorders

2982 S. Union St.

Rochester, NY 14624

(800) 716-7638

(716) 594-1957 (fax)

barbsoft@aol.com

http://www.trisomy.org

1,2,3,5,6,9; also covers other

rare trisomy disorders

CHROMOSOME 4P-

See also: Wolf-Hirschorn

Syndrome

Chromosome 4P- Support Group

Sharon York

2585 Taylor

Longview, WA 98632

(360) 577-9033

syork@scattercreek.com

Priority 4 Families Support Group

(WHS & 4p-)

c/o Brenda Grimmett

5536 Virginia Ct.

Amherst, OH 44001

(440) 282-1460 (Phone)

(440) 989-2005 (fax)

bgrimmett@eriecoast.com

http://priority4familes.tripod.com

1,2,3,6,9; Covers all

Chromosome 4 abnormalities

CHROMOSOME 5P-

See:Cri Du Chat Syndrome

CHROMOSOME 8P DISORDERS

8p Duplication Support Group

Genetics Ctr.

Children's Medical Ctr.

1 Children's Plaza

Dayton, OH 45404

(937) 641-5645

(937) 641-5325 (fax)

genemail@aol.com

3,4,9

CHROMOSOME 9 DISORDERS

Chromosome 9p-Network

675 N. Round Table Dr.

Las Vegas, NV 89110

(702) 453-0788

(702) 459-4711 (fax)

beverly.udell@9pminus.org

http://www.9pminus.org

1,2,3,6,8,9

Trisomy 9 International

Parent Support

Children's Hospital of Michigan

3901 Beaubien Blvd.

Detroit, MI 48201-2196

(313) 745-4513

(313) 745-4827 (fax)

2,3

CHROMOSOME 17P-

See: Smith-Magenis Syndrome

CHROMOSOME 11Q-

Chromosome 11Q- Research

and Resource Group

University of Colorado

Campus Box 295

Boulder, CO 80309

biasca@colorado.edu

http://ucsu.colorado.edu/~bia

CHROMOSOME 18 DISORDERS

Chromosome 18 Registry &

Research Society

6302 Fox Head

San Antonio, TX 78247

(210) 657-4968 (voice/fax)

office@chromosome18.org

http://chromosome18.org

1,2,3,4,6,9

CHROMOSOME 21 RING

See: Chromosome Deletions

CHROMOSOME 22 RING

See also: Chromosome

Deletions

Chromosome 22 Central

259 Kent Ave.

Timmins, ON CAN P4N 3C2

(705) 268-3099 (voice/fax)

98152@c22c.org

http://www.c22c.org

1,2,3,9; Covers all

Chromosome 22-related

disorders.

CHROMOSOME 3,

MONOSOMY 3P2

See: Chromosome Deletions

CHROMOSOME 4 RING

See; Chromosome Deletions;

Wolf-Hirschhorn Syndrome

CHROMOSOME 45,X

See: Turner Syndrome

CHROMOSOME 45,X/46,XX

See: Turner Syndrome

CHROMOSOME 46XYl47,XXY

See: Klinefelter Syndrome

CHROMOSOME 47,XXY

See: Klinefelter Syndrome

CHROMOSOME 47,XYY

See: Klinefelter Syndrome

CHROMOSOME 48,XXXY

See: Klinefelter Syndrome

CHROMOSOME 48,XXXY

See: Klinefelter Syndrome

CHROMOSOME 49,XXXXY

See: Klinefelter Syndrome

CHROMOSOME 9 RING

See: Chromosome Deletions;

Craniofacial Disorders

CHROMOSOME DELETIONS

Chromosome Deletion

Outreach, Inc.

Box 724

Boca Raton, FL 33429-0724

(888) 236-6880

(561) 391-5098

(561) 395-4252 (fax)

cdo@att.net

http://www.chromodisorder.org

1,2,4,9; Also deals with

chromosome translocations,

inversions, Rings trisornies

CHROMOSOME DISORDERS

See also: Chromosome 13 &

78 Disorders

Chromosome 22 Central

237 Kent Ave.

Timmins, ON CAN P4N 3C2

(705) 268-3099 (voice/fax)

[omega]9815@czzc.org

http://www.czzc.org.

1,2,3,9

CHROMOSOME INVERSIONS

National Center on

Chromosome Inversions

1029 Johnson St.

Des Moines, IA 50315

(515) 287-6798 (voice/fax)

Jackie/Barker@hotmail.com

http://www.Barkersnet.com/NC

FCI

3,9

CHROMOSOME

TRANSLOCATIONS

See: Chromosome Deletions

CHROMOSOME TRISOMY

DISORDERS

See: Chromosome 13 & 18

Disorders

CHRONIC ENCEPHALITIS

& EPILEPSY

See: Rasmussen Syndrome

CHRONIC FATIGUE SYNDROME

CFIDS Association of America

Youth Alliance

PO Box 220398

Charlotte, NC 28222-0398

(800) 442-3437

(704) 365-9755 (fax)

info@cfids.org

http://www.cfids.org

1,2,4,6,7,8

CHRONIC INFLAMMATORY

DEMYELINATING

POLYNEUROPATHY

See: Autoimrnune Disorders

CHRONIC INFLAMMATORY

DEMYELINATING

POLYRADICULONEUROPATHY

See: Guillain-Barre Syndrome

CHRONIC LOCALIZED

ENCEPHALITIS

See: Rasmussen Syndrome

CITRULLINEMIA

See: Urea Cycle Disorders

CLEFT PALATE

See also: Craniofacial

Disorders

Cleft Palate Foundation

104 Estes Dr., Ste. 204

Chapel Hill, NC 27514

(800) 242-5338

(919) 933-9044

(919) 933-9604 (fax)

cleftline@aol.com

http://www.cleftline.org

7,8; Spanish materials

CMV, CONGENITAL

See: Cytomegalovirus (CMV),

Congenital

COBALAMIN (B12) DEFIENCY

See also: Metabolic Disorders

Cobalamin Network

PO Box 174

Thetford Center, VT 05075-0174

(802) 785-4029

suebee18@valley.net

3

COCKAYNE SYNDROME

See also: Growth Disorders;

Xeroderma Pigmentosum

Share and Care Cockayne

Syndrome Network

c/o Shirley Rodriguez

PO Box 570618

Dallas, TX 75357

(972) 613-6273

(972) 613-4590 (fax)

193082@Aol.com

1,2,3,4,6,8,9; Spanish and

Japanese materials

COFFIN-SIRIS' SYNDROME

See: Ectodermal Dysplasias

COFFIN-LOWRY SYNDROME

Coffin-Lowry Syndrome

Foundation

c/o Mary C. Hoffman

3045 255th Ave. SE

Sammamish, WA 98075

(425) 427-0939

clsfoundation@yahoo.com

http://www.clsfoundation.tripod.com

1,2,3,9

COGAN'S SYNDROME

See: Autoimmune Disorders

COLITIS

See: Crohn Disease & Colitis

COLOBOMA

See: Visual Impairments

COLON CANCER, HEREDITARY

Hereditary Colon Cancer Registry

c/o Jill D. Brensinger

Johns Hopkins Hospital

550 N. Broadway, Ste. 108

Baltimore, MD 21205

(410) 614-4038

(410) 614-9544 (fax)

hccregistry@jhmi.edu

http://www.hopkinscoloncer.org

3,9

Hereditary Colon Cancer

Association (HCCA)

3601 N. 4th Avenue Suite 201

Sioux Falls, SD 57104-0787

(800) 264-6783

(605) 373-2067

(605) 336-6699 (FAX)

hcca99@mcledusa.net

lhttp://www.hereditarycc.org

1,2,3,4,6,7.8.9; Also provides

supports for attenuated

adematous polyposis coil;

familial adenomatous

polyposis, familial juvenile

polyposis, Gardner syndrome,

hereditary nonpolyposis

colorectal cancer, Peutz-Jegher

syndrome, and Turcot

syndrome.

COMPLEX REGIONAL PAIN

SYNDROME

See: Reflex Sympathetic

Dystrophy Syndrome

CONGENITAL ADRENAL

HYPERPLASIA (CAH)

See also: Adrenal Disorders

CARES Foundation Inc

PO Box 264

Short Hills, NJ 07078-0264

(866) 227-3737

(973) 912-3895

(973) 912-3894

kelly@caresfoundation.org

http://www.caresfoundation.org

1,2,3,4,7,8

CONGENITAL LIPOID

HYPERPLASIA

See: Adrenal Disorders

CONGENITAL SENSORY

NEUROPATHY WITH

ANHIDROSIS

See: Familial Dysautonomia

CONNECTIVE TISSUE

DISORDERS

See also: Ehlers-Danlos

Syndrome; Epidermolysis

Bullosa, Dystrophic; Marfan

Syndrome; Pseudoxanthoma

Elasticum (PXE)

Coalition for Heritable Disorders

of Connective Tissue

382 Main St.

Port Washington, NY 11050

(800) 862-7326

(516) 883-8712

(516) 883-8040 (fax)

staff@marfan.org

http://www.marfan.org

2,7

CONRADI-HUNERMANN

SYNDROME

See: Growth Disorders;

Ichthyosis

COOLEY ANEMIA/

THALASSEMIA MAJOR

See also: Autoimmune

Disorders

Cooley's Anemia Foundation

129-09 26th Ave., Ste. 203

Flushing, NY 11354

(800) 522-7222

(718) 321-2873

(718) 321-3340 (fax)

info@cooleysanemia.org

http://www.cooleysanemia.org

1,2,3,4,5,6,7,8,9; Chinese,

Italian, Korean, Vietnamese

materials available in limited

quantity

Thalassemia Action Group

12909 26th Ave., Ste. 203

Flushing, NY 11354

(800) 522-7222

(718) 321-2873

(718) 321-3340 (fax)

ncaf@aol.com

1,2,3,4,5,6,7,8,9

Thalassemia Foundation

32 Fern Ave.

Weston, ON CAN M9N 1M2

(416) 242-8425

josie.sima@utoronto.ca

1,2,3,4,5,6,8,9

COPPER DEFICIENCY,

X-LINKED

See: Menkes Disease

COPPER MALABSORPTION,

X-LINKED

See: Menkes Disease

CORI DISEASE

See: Glycogen Storage

Diseases; Muscular Dystrophy

CORNELIA DE LANGE

SYNDROME

Cornelia de Lange

Syndrome Foundation

302 W. Main St. #100

Avon, CT 06001-3681

(800) 223-8355

(860) 676-8166

(860) 676-8337 (fax)

cdlsintl@iconn.net

http://cdlsoutreach.org

1,2,3,4,6

CORPUS CALLOSUM

DISORDERS

See: Agenesis of the Corpus

Callosum; Aicardi Syndrome

COX DEFICIENCY

See: Mitochondrial Disorders

CRANIOCARPOTARSAL

DYSTROPHY

See: Freeman-Sheldon

Syndrome

CRANIOECTODERMAL

SYNDROME

See: Ectodermal Dysplasias

CRANIOFACIAL DISORDERS

See also: Apert Syndrome;

Blepharophimosis, Ptosis,

Epicanthus Inversus Syndrome

Carpenter Syndrome (BPES);

Chromosome11q; Cleft Palate;

Dubowitz Syndrome; Freeman-Sheldon

Syndrome; Goldenhar

Syndrome; Holoprosencephaly;

Microtia; Moebius Syndrome;

Nager & Miller Syndromes;

Nevi, Giant Congenital;

Robinow Syndrome;

Rubinstein-Taybi Syndrome;

Sturge-Weber Syndrome;

Treacher Collins Syndrome;

Velo-Cardio-Facial Syndrome

AboutFace International

123 Edwards St. Ste 1003

Toronto, ON CAN M5G1E2

(800) 665-3223

(416) 597-2229

(416) 547-8494 (fax)

abtface@interlog.com

http://www.interlog.com/abtface

1,2,3,4,5,6,7

AboutFace USA

1407-1/2 N. wells

Chicago, IL 60610

(888) 486-1209

AboutFace2000@aol.com

http://www.aboutface2000.org

1,2,3,4,5,6,7

Tennessee Craniofacial Center

c/o Terri Farmer

975 E. Third St.

Chattanooga, TN 37403

(800) 418-3223

(423) 778-9192

(423) 778-8172 (fax)

dnkm90@prodigy.com

http://www.erlangerorg/cranio

1,2,3,5,7

Craniosynostosis and Positional

Plagioceoha,ly Support, Inc.

(CAPPS)

2965-A Quarters

Quantuco, VA 22134

(877) 686-CAPS (2277)

(866) 454-5902

(703) 445-1078 (fax)

stpnjep@aol.com

http://caps2000.org

FACES--The National Craniofacial

Association

PO Box 11082

Chattanooga, TN 37401

(800) 3FACES3 (332-2373)

(423) 266-1632

(423) 267-3124 (fax)

faces@faces-cranio.org

http://www.faces-cranio.org

1,2,3,4,7,9; financial assistance

for medical-related travel

Forward Face: The Charity

for Children with

Craniofacial Conditions

Inst. of Reconstructive Plastic

Surgery

317 E 34th St., Suite 901A

New York, NY 10016

(800) 393-3223

(212) 684-5860

(212) 684-5864 (fax)

1,2,3,4,5,6,7,6,9

Let's Face it

PO Box 29972

Bellingham, WA 98228-1972

(360) 676-7325

letsfaceit@aceit.org

http://www.faceit.org

1,2; Publishes biannual

resource guide.

National Foundation for

Facial Reconstruction

317 E. 34th St., Rm. 901

New York, NY 10016

(212) 263-6656

(212) 263-7534 (fax)

info@nffr.org

http://www.nffr.org

2,3,4,8,9

Children's Craniofacial

Association

Charlene Smith

Executive Director

12200 Park Central Dr., Ste 180

Dallas, TX 75251

(800) 535-3643

(972) 566-5980

(972) 566-8489(fax)

contactCCA@ccakids.com

http://www.ccakids.com

1,2,3,4,6; Spanish materials;

Financial assistance for related

expenses; Annual family

retreat

CRANIOSYNOSTOSIS

See: Craniofacial Disorders

CRI DU CHAT SYNDROME

5p- Society

PO Box 268

Lakewood CA 90914-0268

(888) 970-0777

(714) 901-1544

(562) 920-5240 (fax)

director@fivepminus.org

http://www.fivepminus.org

1,2,3,6,7,9

CRIB DEATH

See: Sudden Infant Death

Syndrome (SIDS)

CRIGLER-NAJJAR

See: Liver Disease and

Transplant

CROHN DISEASE & COLITIS

CCFA: Crohn's & Colitis

Foundation of America

386 Park Ave. S., 17th Fl.

New York, NY 10016-8804

(800) 932-2423

(212) 685-3440

(212) 779-4098 (fax)

info@ccfa.org

http://www.ccfa.org

1,2,3,4,5,6,7,6.,9

Crohn's and Colitis Foundation

of Canada

301-21 St. Clair Ave. E.,

Toronto, ON CAN M4T 1L9

(800) 387-1479 (Canada only)

(416) 920-5035

(416) 929-0364 (fax)

ccfc@ccfc.ca

http://www.ccfc.ca

1,2,5,6,8,9; French materials

Pediatric Crohn's &

Colitis Association

PO Box 188

Newton, MA 02168

(617) 489-5854 (voice/fax)

1,2,3,4,7,6

CROUZON DISEASE

See: Craniofacial Disorders

CURLY HAIR-ANKYLOBLEPHARON-NAIL

DYSPLASIA (CHANDS)

See: Ectodermal Dysplasias

CUSHING SYNDROME

See: Adrenal Disorders

CUTIS HYPERELASTICA

See: Ehlers-Danlos Syndrome

CUTIS LAXA

See: Connective Tissue

Disorders

CYCLIC VOMITING SYNDROME

Cyclic Vomiting

Syndrome Association

3585 Cedar Hill Rd. NW

Canal Winchester, OH 43110

(614) 837-2586 (phone/fax)

waitesd@cvsaonline.org

http://www.cvsaonline.org

1,2,3,4,5,6,8,9

CYSTIC FIBROSIS

Canadian Cystic Fibrosis

Foundation

2221 Yonge St., Ste. 601

Toronto, ON CAN M4S 2B4

(800) 378-2233 (Canada only)

(416) 485-9149

(416) 485-0960 (fax)

info@cysticfibrosis,ca

http://www.cysticfibrosis.ca

1,2,4.5,6,7,8.9; English &

French brochures and booklets;

Videos available in French and

English.

Cystic Fibrosis Foundation

6931 Arlington Rd., 2nd Fl.

Bethesda, MD 20814

(800) FIGHT CF (344-4823)

(301) 951-4422

(301) 951-6378 (fax)

info@cff.org

http://www.cff.org

1,2,4,5,6,7,8,9

CYSTINOSIS

See also: Kidney Disorders

Cystinosis Foundation

2516 Stockbridge Dr.

Oakland, CA 94611

(800) 392-8458

(209) 222-7997

jd2jptz@qmis.net

http://www.cystinosis.com

1,2,3,6,7,8; Italian and French

materials.

CYSTINURIA

See also: Kidney Disorders

Cystinuria Support Network

21001 NE 36th St.

Sammamish, WA 98074

(425) 868-2996

(425) 897-0675 (fax)

cystinuria@aol.com

http://www.cystinuria.com

1,3

CYTOCHROME C OXIDASE

(COX) DEFICIENCY

See: Lactic Acidosis,

Mitochondrial Disorders

CYTOMEGALOVIRUS (CMV),

CONGENITAL

Clinical Care Center

CMV Registry, Feigin Ctr.

Ste. 1150

1102 Bates St.

Houston, TX 77030-2399

(832) 824-4387

(832) 825-4347 (fax)

cmv@bcm.tmc.edu

http://www.bcm.tmc.edu/pedi/infect/cmv.

1,2,3,4

DANDY-WALKER SYNDROME

See also: Hydrocephalus

Dandy Walker Syndrome Network

5030 142nd Path W.

Apple Valley, MN 55124

(952) 423-4008

2,3,4

DARIER DISEASE

See: Ichthyosis

DE BARSEY SYNDROME

See: Connective Tissue Disorders

DE BARSEY-MOENSDIERCKS

SYNDROME

See: Connective Tissue Disorders

DE MORSIER SYNDROME

See: Septo-Optic Dysplasia

DEAF-BLIND

See also: Hearing Impairments;

Visual Impairments

American Association of the

Deaf-Blind

814 Thayer Ave., Ste. 302

Silver Spring, MD 20910

(800) 735-2258 (Voice)

(301) 588-6545 CTDD)

(301) 588-8705 (fax)

1,2,6,7

National Family Association for

Deaf-Blind

111 Middle Neck Rd.

Sands Point, NY 11050-1129

(800) 255-0411, ext.275

(516) 944-8637 (TDD)

(516) 944-7302 (fax)

nfadb@aol.com

http://www.NFAD.org

1,2,3,4,6,7; Newsletter

available by request in braille,

on disk (WP5.1) or large print.

The Canadian Deafblind and

Rubella Association

c/o The W. Ross Macdonald

School

350 Brant Ave.

Brantford, ON CAN N3T 3J9

(519) 754-0729

(519) 754-5400 (fax)

1,2,7

DEAFNESS

See: Hearing Impairments

DEBRANCHER ENZYME

DEFICIENCY

See: Glycogen Storage

Diseases; Muscular Dystrophy

DECARBOXYLICACIDURIA

See: Fatty Oxidation Disorder

DECEREBRATE DEMENTIA

See: Subacute Sclerosing

Panencephalitis

DEJERINE SOTTAS DISEASE

See: Muscular Dystrophy

DEJERINE-LANDOUZY

See: Muscular Dystrophy;

Facio-Scapulo-Humeral

Muscular Dystrophy

DELTA STORAGE POOL

DISEASE

See: Hermansky-Pudlak

Syndrome

DENTOOCULOCUTANEOUS

SYNDROME

See: Ectodermal Dysplasias

DERMATITIS HERPETIFORMIS

See: Celiac Disease; Celiac

Sprue; Gluten Intolerance

DERMATOCHALASIA

See: Connective Tissue

Disorders

DERMATOLYSIS

See: Connective Tissue

Disorders

DERMATOMEGALY

See: Connective Tissue

Disorders

DERMATOMYOSITIS

See: Arthritis; Muscular

Dystrophy; Myositis

DERMOODONTODYSPLASIA

See: Ectodermal Dysplasias

DERMOTRICHIC SYNDROME

See: Ectodermal Dysplasias

DEVELOPMENTAL

DISABILITIES

See: Mental Retardation

DIABETES INSPIDUS

See also: Autoimmune

Disorders

The Diabetes Insipidus

Foundation Inc.

4533 Ridge Dr.

Baltimore, MD 21229

(410) 247-3953

(610) 326-7955 (parent support)

diabetesinsipidus@maxinter.net

http://diabetesinsipidus.maxinter.net

1,2,3,4

DIABETES MELLITUS

See also: Autoimmune

Disorders; Kidney Disorders

American Diabetes Association

Government Relations

Department

1701 N. Beauregard Street.

Alexandria, VA 22311

(703) 549-1500

(703) 549-8748(fax)

http://www.diabetes.org

1,2,4,5,6,7,8

Canadian Diabetes Association

15 Toronto St., Ste. 800

Toronto, ON CAN M5C 2E3

(416) 363-3373

(416) 363-3393 (fax)

info@diabetes.ca

http://www.diabetes.ca

1,2,4,5,6,7,8; French Materials

DIGESTIVE DISORDERS

See: Celiac Disease/Celiac

Sprue; Crohn Disease &

Colitis; Gluten Intolerance;

Intestinal Pseudo-Obstruction

Syndrome; Ostomy

DIGESTIVE DYSMOTILITY

See: Intestinal Pseudo-Obstruction

Syndrome

DIMORSIER SYNDROME

See: Growth Disorders

DISCOID LUPUS

See: Autoimmune Disorders

DOWN SYNDROME

Association for Children with

Down Syndrome

4 Fern PL.

Plainview, NY 11803

(516) 933-4700

(516) 933-7524(fax)

info@acds.org

http://www.acds.org

1,2,3,4; bilingual services

Canadian Down

Syndrome Society

811 14th St. NW

Calgary, AB CAN T2N 2A4

(800) 883-5608 (Canada only)

(403) 270-8500

(403) 270-8291 (fax)

dsinfo@cdss.ca

http://www.cdss.ca

1,2,3,4,5,6,7; French materials

Foundation for Children with

Down Syndrome

3920 Blaisdell Ave. S., Ste. 1

Minneapolis, MN. 55409

(918) 836-8698

(612) 822-1032 (fax)

http://www.ffcwds.org

La Foundacion John Langdon

Down, A.C.

Selva 4

Insurgentes Cuicuitco

Delegacion Coyocan, 04530

Mexico DF

(52) 66-66-8580

(52) 56-06-3800 (FAX)

fjldown@mail.internet.com.mx

International Foundation for

Genetic Research

500A Garden City Dr.

Pittsburgh, PA 15146

(412) 823-6380

(412) 373-7713 (fax)

tmf@pennet.com

http://www.pennet.com/chuckdet/index.html

1,2,4,7,8

National Down Syndrome

Congress

7000 Peachtree

Dunwoody Rd., Bldg. 5,

Ste. 100

Atlanta, GA 30328-1655

(800) 232-6372

(770) 604-9500

(770) 604-9898 (fax)

ndsccenter@aol.com

http://www.ndsccenter.org

1,2,4,5,6,7

National Down Syndrome Society

666 Broadway, 8th Fl.

New York, NY 10012-2317

(800) 221-4602

(212) 460-9330

(212) 979-2873 (fax)

info@ndss.org

http://www.ndss.org

1,2,3,4,5,6,7,8

Trisomy 21 Research Foundation

933 First Colonial Rd., Ste. 109

Virginia Beach, VA 23454

(757) 425-1969

(757) 425-1822 (fax)

lleichtman@macs.net

http://www.tri21.org

2,7,8,9

DUAL SENSORY IMPAIRMENTS

See: Deaf-Blind

DUBOWITZ SYNDROME

See also: Craniofacial

Disorders; Growth Disorders

Dubowitz Syndrome Parent

Support Network

PO Box 2441

Vincennes, IN 47591

(812) 886-0575

(812) 886-1128 (fax)

bobbie@dubowitz.org

http://dubowitz.org

DUCHENNE MUSCULAR

DYSTROPHY

See: Muscular Dystrophy

DWARFISM

See also: Growth Disorders;

Short Stature

Billy Batty Foundation

929 W. Olive Ave., Ste. C

Burbank, CA 91506

(818) 953-5410

http://www.rth.org/bbf/

Metatropic Dwarf Registry

3393 Geneva Drive

Santa Clara, CA 95051

(408) 244-6354

(408) 296-6317 (fax)

figone@netgate.net

http://www.u2.netgate.net/~cfigone/mdr/Index.htm

2,3; physician referrals;

international membership

DYGENESIS OF THE

CORPUS CALLOSUM

See: Agenesis of the Corpus

Callosum

DYSAUTONOMIA

See also: Famial

Dysautonomia

National Dysautonomia Research

Foundation (NDRF)

421 W. Fourth St., Suite 9

Red Wing, MN 55066

(651) 267-0525

(651) 267-0524 (fax)

ndrf@ndrf.org

http://www.ndrf.org

1,2,3,4,5,6,7,8,9

DYSAUTONOMIA, FAMILIAL

See: Familia/Dysautonomia

DYSKERATOSIS, CONGENITAL

See: Ectodermal Dysplasias

DYSLEXIA

See also: Attention Deficit

Disorder; Learning Disabilities

Dyslexia Research Institute

5746 Centerville Rd.

Tallahassee, FL 32309

(850) 893-2216

(850) 893-2440 (fax)

dri@talstar.com

http://www.dyslexia-add.org

2,3,4

The International Dyslexia

Association

8600 La Salle Rd.

Chester Bldg., Ste. 382,

Baltimore, MD 21286-2044

(800) 222-3123

(410) 296-0232

(410) 321-5069 (fax)

info@interdys.org

http://www.interdys.org

1,2,3,4,5,8,7,8,9; Spanish

materials

Recording for the Blind &

Dyslexic

20 Roszel Rd.

Princeton, NJ 08540

(609) 452-0606,

(609) 520-7990 (fax)

2; Extensive lending library of

academic textbooks on

audiocassette (all levels)

DYSOSTOSIS, ACROFACIAL,

NAGER TYPE

See: Nager & Miller

Syndromes

DYSOSTOSIS,

MANDIBULOFACIAL

See: Nager & Miller

Syndromes; Treacher Collins

Syndrome

DYSOSTOSIS, METAPHYSEAL,

TYPE B IV

See: Shwachman Syndrome

DYSOSTOSIS, POSTAXIAL

ACROFACIAL

See: Nager & Miller

Syndromes

DYSPLASTIC ANGIECTASIA,

CONGENITAL

See: Klippel-Trenaunay

Syndrome

DYSTONIA

Dystonia Medical

Research Foundation

One E. Wacker Dr., Ste. 2430-Chicago,

IL 60601-1905

(312) 755-0198

(312) 803-0138 (fax)

(800) 361-8061 (In Canada only)

jfeeley@dystoniafoundation.org

http://www.dystoniafoundation.org/

1,2,3,4,5,6,7,8,9

Dystonia Medical Research

Foundation--Canada

116-230 Heath St. W.

Toronto, ON CAN M5P 1N8

(800) 361-8061 (Canada only)

(416) 488-6974

(416) 488-8323

Dystonia@dystonia-foundation.org

1,2,3,5,6,8

DYSTROPHIC EPIDERMOLYSIS

BULLOSA

See: Epidermolysis Bullosa,

Dystrophic

EATON-LAMBERT SYNDROME

See: Muscular Dystrophy

ECTODERMAL DYSPLASIAS

Canadian Society for Ectodermal

Dysplasia (Western Canada)

304 Hawkwood Blvd., NW

Calgary, AB CAN T3G 2Y5

(416) 664-6121

2,3,4

National Foundation for

Ectodermal Dysplasia

410 E. Main St.

PO Box 114

Mascoutah, IL 62258-0114

(618) 566-2020

(618) 566-4718 (fax)

nfed1@aol.com

http://www.nfed.org

1,2,3,4,6,7,8,9

ECTRODACTYLY-ECTODERMAL

DYSPLASIA-CLEFT LIP/PALATE

(EEC) SYNDROME

See: Cleft Palate; Craniofacial

Disorders; Ectodermal

Dysplasias

EEC SYNDROME

See: Cleft Palate; Craniofacial

Disorders; Ectodermal

Dysplasias

EHLERS-DANLOS SYNDROME

See also: Connective Tissue

Disorders; Glaucoma;

Visual Impairments

Ehlers-Danlos National Foundation

6399 Wilshire Blvd.

Suite 203

Los Angeles, CA 90048

(323) 651-3038

(323) 651-1366 (fax)

ednfboard@aol.com

http://www.ednf.org

1,2,3,4,5,8,8

EINTEIN SYNDROME

See: Hearing Impairments;

Kidney Diseases, Hereditary;

Vision Impairments

ELASTORRHEXlS

See: Connective Tissue

Disorders

ELASTOSIS DYSTROPHICA

SYNDROME

See: Pseudoxanthoma

Elasticum (PXE)

ELEPHANTITIS

See: Lymphedema

ELLIS-VAN CREVELD

SYNDROME

See: Ectodermal Dysplasias

EMERY-DREIFUSS

MUSCULAR DYSTROPHY

See: Muscular Dystrophy

EMG SYNDROME

See: Beckwith-Wiedemann

Syndrome

ENCEPHALITIS, CHRONIC

LOCALIZED

See: Rasmussen Syndrome

ENCEPHALITIS &

EPILEPSY, CHRONIC

See: Rasmussen Syndrome

ENCEPHALITIS, RASMUSSEN

See: Rasmussen Syndrome

ENCEPHALOFACIAL

ANGIOMATOSIS

See: Sturge-Weber Syndrome

ENCEPHALOMYELOPATHY

See: Lactic Acidosis;

Mitochondrial Disorders

ENCEPHALOMYELORADICULOPATHY,

ACUTE ISSEMINATED

See: Guillain-Barre Syndrome

ENCEPHALOTRIGEMINAL

ANGIOMATOSIS

See: Sturge-Weber Syndrome

ENCHONDROMATOSIS,

ENCHONDROSES

See: Ollier Disease

ENDOCARDIAL

FIBROSLASTOSIS

See: Heart Disorders

ENTEROPATHY, GLUTENSENSITIVE

See: Celiac Disease; Celiac

Sprue; Gluten Intolerance

EOSINOPHILIC GRANULOMA

See: Histiocytosis

EPICANTHUS INVERSUS

See: Blepharophimosis, Ptosis,

Epicanthus Inversus Syndrome

(BPES)

EPIDERMOLYSIS BULLOSA,

DYSTROPHIC

See also: Connective Tissue

Disorders

DEBRA: Dystrophic Epidermolysis

Bullosa Research Association

40 Rector St., Ste. 1403

New York, NY 10006

(212) 513-4090

(212) 513-4099 (fax)

staff.debra@exario.net

http://www.debra.org

1,2,3,4,5,6,7,8,9, Spanish

materials

EPIDERMOLYTIC

HYPERKERATOSIS

See: Ichthyosis

EPILEPSY

See also: Seizure Disorders

American Epilepsy Society

842 North Main St.

West Hartford, CT 06117-2507

(860) 586-7505

(860) 586-7550 (fax)

info@aesnet.org

http://www.aesnet.org

2,8

Epilepsy Canada

1470 Peel St., Ste. 745

Montreal, QUE CAN H3A 1T1

(877) SEIZURE (734-0873)

(514) 845-7855

(514) 845-7866 (fax)

epilepsy@epilepsy.ca

http://www.epilepsy.ca

1,2,4,5,6,7,8; French materials

Epilepsy Foundation of America

4351 Garden City Dr.

Landover, MD 20785-2267

(800) 332-4050

(301) 459-3700

(301) 577-2684 (fax)

postmaster@efa.org

http://www.efa.org

1,2,4,5,6,7; Spanish materials

EPILOIA

See: Tuberous Sclerosis

ERB PALSY

Brachial Plexus/Erb's Palsy

Support and Informational

Network, Inc.

PO Box 23

Larsen, WI 54947

(920) 836-9587

http://www.customforum.com/nationalbpi

nationalbpi@powernetonline.com

1,2,3,4,5,6

ERB/DUCHENNE PALSY

See: Erb Palsy

ERDHEIM-CHESTER DISEASE

See: Histiocytosis

ERYTHROBLASTOPHTHISIS

See: Anemia, Aplastic

ERYTHROBLASTOTIC ANEMIA

OF CHILDHOOD

See: Cooley Anemia

ERYTHROID HYPOPLASIA,

CONSTITUTIONAL

See: Anemia, Diamond-Blackfan

ERYTHROHEPATIC

PROTOPORPHYRIA

See: Liver Disorders; Porphyria

ERYTHROKERATODERMIAS

See: Ichthyosis

ERYTHROPHAGOCYTIC

LYMPHOHISTIOCYTOSIS,

FAMILIAL

See: Histiocytosis

ESOPHAGEAL ATRESIA

See: VACTERL Association

EVANS SYNDROME

See also: Autoimmune

Disorders; Neutropenia

Evans Syndrome Support and

Research Group

c/o Lou Addington

5630 Devon St.

Port Orange, FL 32127

(904) 760-3031

(904) 760-5583 (fax)

73142.1315@compuserve.com

3,4,9

EXOMPHALOS-MACROGLOSSIA-GIGANTISM

(EMG) SYNDROME

See: Beckwith-Wiedemann

Syndrome

EXOSTOSES, MULTIPLE

HEREDITARY

The MHE Coalition/

MHE Family Support Group

Chele Zelina

8838 Holly Lane

Olmsted Falls, OH 44138

(440) 235-6325 or

(440) 427-9032

CheleZ1@aol.com

http://www.radix.net/~hogue/mhe.htm

1,2,3,4,9; upcoming conference

at the University of Arizona,

Spring 2002

MHE and Me--A Support Group

or Kids With Multiple Hereditary

Exostoses and Their Families

14 Stony Brook Dr.

Pine Island, NY 10969

(845) 258-6058

mheandme@yahoo.com

http://www.geocities.com/mheandme

2,3; Some info. in Spanish

EXTRACORPOREAL

MEMBRANE OXYGENATION

ECMO Moms and Dads

International Parent Support

PO Box 53848

Lubbock, TX 79453

(806) 892-3348

(806) 792-1289 (fax)

bgw@odsy.net

2,3,

FABRY DISEASE

See also: Tay-Sachs Disease

International Center for Fabry

Disease

Dept. of Human Genetics

Mt. Sinai School of Medicine

5th Ave. at 100th St.

Box 1498

New York, NY 10029

(866) 322-7963 (for parents)

(212) 659-6700

(212) 360-1809 (fax)

fabry.disease@mssm.edu

http://www.mssm.edu/crc/Fabry

1,2,3,7,9

FACIAL DISFIGUREMENT

See: Craniofacial Disorders

FACIAL PARALYSIS

See: Bell's Palsy

FACIAL-AURICULOVERTEBRAL

ANOMALY

See: Goldenhar Syndrome

FACIO-CARDIOCUTANEOUS

SYNDROME

See: Heart Disorders/

Ichthyosis

FACIOSCAPULOHUMERAL

MUSCULAR DYSTROPHY

FSH Society, Inc.

3 Westwood Rd.

Lexington, MA 02420

(781) 860-0501

(781) 860-0599 (fax)

carol.perez@fshsociety.org

http://www.fshsociety.org

1,2,3,4,5,6,7,6,9

FAMILIAL ATAXIA

See: Ataxia; Friedreich Ataxia

FAMILIAL ADENOMATOUS

POLYPOSIS

See: Colon Cancer, Hereditary

FAMILIAL DYSAUTONOMIA

See also: Dysautonomia

FD Familial Dysautonomia

Foundation

343 Clarke Ave. W., Ste. 1103

Thornhill, ON CAN L4J 7K5

(905) 882-7725

(905) 764-7752 (fax)

1,2,3,4,5,6,3,9

Dysautonomia Foundation

633 3rd Ave., 12th Fl.

New York, NY10017

(212) 949-6644

(212) 682-7625 (fax)

1,2,8

FAMILIAL JUVENILE

POLYPOSIS

See: Colon Cancer, Hereditary

FAMILIAL PEMPHIGUS

See: Ichthyosis

FAMILIAL SPLENIC ANEMIA

See: Gaucher Disease

FANCONI ANEMIA

See: Anemia, Fanconi

FANCONI II

See: Cystinosis

FANCONI PANMYELOPATHY

See: Anemia, Fanconi

FARBER DISEASE

See: Tay-Sachs Disease

FAS/FAE

See: Fetal Alcohol

Syndrome/Effect

FATTY OXIDATION DISORDER

See also: Metabolic Disorders

FOD Family Support Group

805 Montrose Dr.

Greensboro, NC 27410

(336) 547-8682

fodgroup@aol.com

http://www.fodsupport.org

1,2,3,7

FEMALE SEX CHROMOSOME

DISORDERS

See: Turner Syndrome

FETAL ALCOHOL

SYNDROME/EFFECT

Council on Alcoholism & Drug

Abuse of Bergen, Inc.

10 E. Broadway

Hackensack, NJ 07601

(201) 488-8680

(201) 488-8724 (fax)

2,3,4

Family Empowerment Network:

Supporting Families Affected

by FAS/FAE

517 Lowell Center

610 Langdon St.

Madison, WI 53703

(800) 462-5254

(608) 262-6590

(608) 265-3352 (fax)

qfen@.dcs.wisc.edu

1,2,3,4,6,7; Spanish materials

Fetal Alcohol Education Program

1975 Main St.

Concord, MA 01742

(508) 369-7713

2,3,4,9

National Organization on Fetal

Alcohol Syndrome

216 G. St., NE

Washington, DC 20002

(800) 66 NOFAS (66327)

(info. line)

(202) 785-4585

(202) 466-6456 (fax)

nofas@erols.com

http://www.nofas.org

1,2,3,4; available in English

and Spanish

The Fetal Alcohol Syndrome

Family Resource Institute

PO Box 2525

Lynnwood, WA 98036

(800) 999-3429

(253) 531-2878

(253) 531-2668 (fax)

vicfas@hotmail.com

http://www.fetalalcoholsyndrome.org

1,2,3,4,5,6,9

Fetal Alcohol Support Network

2266 Homeland Dr.

Mississauga, ON CAN LSK 1G6

(905) 822-0733 (voice/fax)

1,2,3,4,9

FETAL FACE SYNDROME

See: Robinow Syndrome

FETAL IRITIS SYNDROME

See: Norrie Disease

FG SYNDROME

See also: Opitz Syndrome

FG Syndrome Family

Alliance, Inc.

3839 NW Eastview Pl.

Corvallis, OR 97330

(541) 753-8075

http://www.fg-syndrome.org

FIBROMYALGIA

See: Arthritis

FIBRODYSPLASIA OSSIFICANS

PROGRESSIVA

International Fibrodysplasia

Ossificans Progressiva

Association

PO Box 196217

Winter Springs FL 32719-6217

(407) 365-4194

(407) 365-3213 (Fax)

1,2,3,8

FIBROUS DYSPLASIA,

MONOSTOTIC

See: McCune-Albright

Syndrome

FIRST AND SECOND

BRANCHIAL ARCH SYNDROME

See: Goldenhar Syndrome

FISCHER SYNDROME

See: Guillain-Barre Syndrome

FISCHER-JACOBSEN-CLOUSTON

SYNDROME

See: Ectodermal Dysplasias

FOCAL DERMAL HYPOPLASIA

(FDH) SYNDROME

See: Craniofacial Disorders;

Ectodermal Dysplasias;

Hearing Impairments

FOLATE METABOLISM;

INBORN ERROR OF

See: Cobalamin (B12)

Defiency

FOOD ALLERGY

See also: Asthma & Allergy

The Food Allergy and

Anaphylaxis Network

10400 Eaton Pl., Ste. 107

Fairfax, VA 22030-2208

(800) 929-4040

(703) 691-2713 (fax)

faan@foodallergy.org

http://www.foodallergy.org

1,2,6,7,9

FORBES DISEASE

See: Glycogen Storage

Diseases; Muscular Dystrophy

FRAGILE X SYNDROME

See also: Attention Deficit

Disorder; Autism; Learning

Disabilities

FRAXA Research Foundation

45 Pleasant St.

Newburyport, MA 01950

(978) 462-1866

(978) 463-9985 (fax)

info@fraxa.org

http://www.fraxa.org

1,2,3,5,7,8,9; Internet mailing

list

National Fragile X Foundation

PO Box 190488

San Francisco, CA 94119-0488

(800) 688-8765

(510) 763-6223 (fax)

NATLFX@sprintmail.com

http://www.FragileX.org

1,2,3,4,5,6,7,8

FRANCHESCHETTI-KLEIN

SYNDROME

See: Treacher Collins Syndrome

FRAXA

See: Fragile X Syndrome

FREDREICH DISEASE

See: Ataxia; Friedreich Ataxia

FREDREICH TABES

See: Ataxia; Friedreich Ataxia

FREEMAN-SHELDON

SYNDROME

See also: Craniofacial

Disorders

Freeman-Sheldon Parent

Support Group

509 E. Northmont Wy.

Salt Lake City, UT 84103

(801) 364-7060

fspsg@aol.com

http://www.fspsg.org

1,2,3,4,7,9,

FRIEDREICH ATAXIA

See also: Ataxia; Muscular

Dystrophy

Canadian Association of

Friedreich's Ataxia

5620 C A Jobin St.

Montreal, QUE CAN H1P 1H8

(514) 321-8684

(514) 321-9257 (fax)

http://www.cam.org/~acaf

1,2,8,9; French materials

FUCOSIDOSIS

See: Tay-Sachs Disease

FULLER-ALBRIGHT SYNDROME

See: McCune-Albright

Syndrome

FULMINATING HYPERPYREXIA

See: Malignant Hyperthermia

GALACTOSE-1-PHOSPHATE

URIDYL TRANSFERASE

DEFICIENCY

See: Galactosemia

GALACTOSEMIA

See also: Metabolic Disorders,

Liver Disease

Parents of Galactosemic

Children Inc.

885 Del Sol St.

Sparks, NV 89436

(775) 626-0885

http://www.galactosemia.org

1,2,5,6

GARDNER SYNDROME

See: Colon Cancer, Hereditary;

Polyposis

GASTROESOPHAGEAL REFLUX

See also: Intestinal Pseudo-Obstruction

Syndrome

Gastroesophageal Reflux (GER)

Pediatric/Adolescent

Gastroesophageal Reflux

Association Inc. (PAGER)

PO Box 1153

Germantown, MD 20875-1153

(301) 601-9541

gergroup@aol.com

http://www.reflux.org

1,2,3,5,6,8,9

GASTROINTESTINAL CANCER

See: Colon Cancer, Hereditary;

Polyposis

GASTROINTESTINAL

DISORDERS

The Oley Foundation

214 Hun Memorial

Albany Medical Center, A-28

Albany, NY 12208-3478

(800) 776-OLEY (6539)

(518) 262-5079

(518) 262-5528 (fax)

BishopJ@mailamc.edu

http://www.oley.org

1,2,3,4,5,6,7,9

GAUCHER DISEASE

See also: Tay-Sachs Disease

National Gaucher Foundation

11140 Rockville Pike, Ste. 350

Rockville, MD 20852-3106

(800) 925-8885

(301) 816-1515

(301) 816-1516 (fax)

ngf@gaucherdisease.org

http://www.gaucherdisease.org

1,2,3,4,5,6,7,8,9

GENEE-WIEDEMANN

SYNDROME

See: Nager & Miller Syndromes

GENETIC DISORDERS

Genetic Alliance

4301 Connecticut Ave. NW,

Ste. 404

Washington, DC 20008-2304

(202) 966-5557

(202) 966-8553 (fax)

(800) 336-GENE (4363) helpline

http://www.geneticalliance.org

info@geneticalliance.org

1,2,3,4,6,7,9; Spanish

materials; rare chromosome

abnormalities

Association of Genetic Support

Inc. (AGSA)

66 Albion St,

Surry Hills, Australia NSW 2010

(02) 9211 1462,

(02) 9211 8077 (fax)

agsa@ozomail.com.au

http://www.agsa-geneticsupport.org.au

1,2,3,4; annual genetics

awareness week; counseling,

information, and support

Northeast VCFS Support Group

2 Lansing Dr.

Salem, NH 03079

(603) 898-6332

MLADJA@aol.com

http://www.vcfsef.org

1,2,3,4,6

GENITALIA, AMBIGUOUS

See also: Hermaphroditism

Ambiguous Genitalia

Support Network (AGSN)

PO Box 313

Clements, CA 95227-0313

agsn@jps.net

http://www.jps.net/agsn

2,3,4,6,7

GILFORD SYNDROME

See: Progeria

GINGIVAL FIBROMATOSIS

AND HYPERTRICHOSIS

See: Ectodermal Dysplasias

GIROUX-BARBEAU SYNDROME

See: Ichthyosis

GLAUCOMA

See also: Visual Impairments

Glaucoma Research Foundation

200 Pine Street Ste. 200

San Francisco, CA 941 04

(800) 826-6693

(415) 986-3162

info@glaucoma.org

http://www.glaucoma.org

1,2

GLUCOSYL CEREBROSIDE

LIPIDOSIS

See: Gaucher Disease

GLUTARIC ACIDURIA, TYPE I

See also: Acidemia, Organic;

Lactic Acidosis

International Organization for

Glutaric Aciduria, Type I

IOGA

Rd #4, Box 299-A

Blairsville. PA 15717

(724) 459-0179

cswelch@helicon.net

http://www.glutaricacidemia.org

2,3,4,6,7,8

GLUTARICACIDURIA I

See: Glutaric Aciduria, Type I

GLUTARICACIDURIA II

See: Acidemia, Organic;

Lactic Acidosis

GLUTEN INTOLERANCE

See also: Celiac Disease;

Celiac Sprue

Gluten Intolerance

15110 10 Ave. SW, Ste. A

Seattle, WA 98116-1820

(206) 246-6652,

(206) 246- 6531 (fax)

info@gluten.net

http://www.gluten.net

1,2,3,4,5,6,7,8

GLUTEN-SENSITIVE

ENTEROPATHY

See: Celiac Disease; Celiac

Sprue; Gluten Intolerance

GLYCOGEN STORAGE

DISEASES

Association for Glycogen Storage

Disease

PO Box 896

Durant, IA 52747

(563) 785-6038 (voice/fax)

http://www.agsd us.org

1,2,3,4,6,8

Glycogen Storage Disease

List Serve

To register send e-mail to:

LISTSERV@MAELSTROM.STJOHNS.EDU

3

GLYCOGENOSES

See: Glycogen Storage

Diseases

GLYCOSPHINGOLIPIDOSES

See: Tay-Sachs Disease

GOLDENHAR SYNDROME

See also: Craniofacial

Disorders

Goldenhar Syndrome Research & Information Fund

PO Box 61643

St. Petersburg, FL 33714

(813) 522-5772

(813) 522-5885 (fax)

btorman@pbsnet.com

http://www.GOLDENHAR.com

2

GOLDENHAR-GORLIN

SYNDROME

See: Goldenhar Syndrome

GOLDFLAM DISEASE

See: Myasthenia Gravis

GONADAL DYGENESIS (45, X)

See: Turner Syndrome

GORLIN-CHAUDHRYMOSS

SYNDROME

See: Ectodermal Dysplasias

GRANULOMA, EOSINOPHILIC

See: Histiocytosis

GRANULOMATOUS DISEASE,

CHRONIC

See also: Immune Disorders

Chronic Granulomatous Disease

Association Inc.

c/o Mary Hurley

2616 Monterey Rd.

San Marino, CA 91108

(626) 441-4118

cgda@socal.rr.com

http://www.cgdassociation.org

1,2,3,4,7,8,9

GRAVES DISEASE

See: Thyroid Disorders

GROENBLAD-STRANDBERG

SYNDROME

See: Pseudoxanthoma

Elasticum (PXE)

GROUP B STREP

Group B Strep Association

PO Box 16515

Chapel Hill, NC 27516

(919) 932-5344

(919) 932-3657 (fax)

http://www.groupbstrep.org

1,2,3,4,7,8,9

GROWTH DISORDERS

See also: Dwarfism; Short

Stature

Human Growth Foundation

997 Glen Cove Ave.

Glen Head, NY 11545

(800) 451-6434

(516) 671-4041

(516) 671-4055 (fax)

hgf1@hgfound.org

http://www.hgfound.org

1,2,3,6,8,9; Spanish materials

Little People's Research Fund

80 Sister Pierre Dr.

Towson, MD 21204

(800) 232-5773

(410) 494-0055

(410) 494-0062 (fax)

lprf@lprf.org

http://www.lprf.org

1,2,8

MAGIC Foundation

1327 N. Harlem Ave.

Oak Park, IL 60302

(800) 362-4423

(708) 383-0808 (fax)

(708) 383-0899

mary@magicfoundation.org

http://www.magicfoundation.org

1,2,3,4,5,6,9; Spanish

materials; pen pal program for

children

GROWTH HORMONE

DEFICIENCY

See: Growth Disorders

GROWTH RETARDATION,

INTRAUTERINE

See: Growth Disorders

GROWTH RETARDATION-ALOPECIA-PSEUDOANODONTIA-OPTIC

ATROPHY

See: Ectodermal Dysplasias

GUERIN-STERN SYNDROME

See: Arthrogryposis Multiplex

Congenita

GUILLAIN-BARRE SYNDROME

See also: Autoimmune

Disorders

Guillain-Barre Syndrome Support

Group of Ontario

c/o M.D.A.C

2345 Yonge St., Ste. 901

Toronto, ON CAN M4P 2E5

(800) 567-2873

(519) 747-5777

(519) 747-5987 (fax)

info@brenfile.com

1,5,6,8,9

Guillain-Barre Syndrome

Foundation International

PO Box 262

Wynnewood, PA 19096

(610) 667-0131

(610) 667-7036 (fax)

GBINT@ix.netcom.com

http://www.guillain-barre.com

GUNTHER PORPHYRIA

See: Porphyria

HADDAD SYNDROME

See: Central Hypoventilation

Syndrome, Congenital

HAILEY-HAILEY DISEASE

See: Ichthyosis

HAIRY ELBOWS DYSPLASIA

See: Ectodermal Dysplasias

HALLERMAN-STREIFF

SYNDROME

See: Craniofacial Disorders;

Ectodermal Dysplasias; Short

Stature

HALLERVORDEN-SPATZ

SYNDROME

Hallervorden-Spatz Syndrome

Association

2082 Monaco Ct.

El Cajon, CA 92019-4235

(619) 588-2315

(619) 588-4093 (fax)

http://www.hssa.org

HALLOPEAU-SIEMENS

DISEASE

See: Epidermolysis Bullosa,

Dystrophic

HAND-SCHULLER-CHRISTIAN

SYNDROME

See: Histiocytosis

HAND-SHOULDER SYNDROME

See: ReflexSympathetic

Dystrophy Syndrome

HARLEQUIN ICHTHYOSIS

See: Ichthyosis

HAY-WELLS SYNDROME

See: Cleft Palate; Craniofacial

Disorders; Deaf-Blind;

Ectodermal Dysplasias;

Hearing Impairments; Visual

Impairments

HAYDEN SYNDROME

See: Ectodermal Dysplasias

HEAD INJURY

See: Brain Injury

HEARING IMPAIRMENTS

Alexander Graham Bell

Association for the Deaf and hard

of hearing

3417 Volta Pl. NW

Washington, DC 20007-2778

(202) 337-5220 (voice/TDD)

(202) 337-8314 (fax)

lquigley@agbell.org

http://www.agbell.org

1,2,3,4,5,6; Spanish materials,

scholarship program

American Society for

Deaf Children

PO Box 3355

Gettysburg, PA 17325

(800) 942-2732 (voice/TDD)

(717) 334-7922

(217) 334-8808 (fax)

asdc1@aol.com

http://www.deafchildren.org

1,2,3,4,5,6,7

American Speech, Language,

Hearing Association

10801 Rockville Pike

Rockville, MD 20852

(301) 897-5700

(301) 571-0457 (fax)

http://www,asha.org

1,2,3,5,7,6,9

Auditory-Verbal International

2121 Eisenhower, Ste. 402

Alexandria, VA 22314

(703) 739-1049

(703) 739-0874 (TDD)

(703) 739-0395 (fax)

audiverb@aol.com

http://www.auditory-verbal.org

1,2,3,4,6,7

Better Hearing Institute--U.S.

and Canada

515 King Street, Suite 420

Alexandria, VA 22314

(800) 327-9355 (voice/TDD)

(703) 684-3391

1,2,4

Cochlear Implant Association, Inc.

5335 Wisconsin Ave. NW

Washington, DC 20015

(202) 895-2781

(202) 895-2782 (fax)

76207.3114@compuserve.com

1,2,3,4,5,6,7

Deafness Research Foundation

1225 1 St., Ste. 500

Washington, DC 20005

(800) 829 -5334 (voice/TDD):

(202) 289-5850 (voice/TDD):

http://www.hearinghealth.org

1,2,4,7,8,9

Gallaudet University

Office of Public Relations

800 Florida Ave., NE

Washington, DC 20002-3695

(202) 651-5050

(202) 651-5608 (TDD)

(202) 651-5704 (fax)

public.relations@gallaudet.edu

http://www.gallaudet.edu

HEAR Now The Us Program of

the Starkey Hearing Foundation

4248 Park Glen Rd.

Minneapolis MN 55416

(800) 648-4327

(952) 828-6946 (fax)

nonprofit@starkey.com.

1,2,7; accepts tax-deductible

donations of used hearing aids

John Tracy Clinic for Preschool

Deaf Children

806 W. Adams Blvd.

Los Angeles, CA 90007

(800) 522-4582 (voice/TDD)

(213) 748-5481

(213) 747-2924 (TDD)

(213) 749-1651 (fax)

mmartindale@johntracyclinic.org

http://www.johntracyclinic.org

1,2,4; free correspondence

course for preschoolers,

Spanish materials

Lead Line

House Ear Institute

2100 W. Third St., 5th Flr.

Los Angeles, CA 90057

(800) 352-8888 (voice/TDD)

(800) 287-4763 (voice/TDD,

Canada only)

(213) 484-2642

(213) 483-4431 (fax)

blincoln@hei.org

http://www.hei.org

2,3,4

National Association of the Deaf

814 Thayer Ave., Ste. 250

Silver Spring, MD 20910-4500

(301) 587-1788

(301) 587-1789 (TDD)

(301) 587-1791 (fax)

nadinfo@nad.org

http://www.nad.com

1,2,4,5,6,7; youth program

includes Jr NAD clubs and

Youth Leadership Camp.

National Deaf Education Network

and Clearinghouse

KDES PAS-6

800 Florida Ave., NE

Washington, DC 20002-3695

(202) 651-5051

(202) 651-5052 (TDD)

(202) 651-5044 (fax)

Clearinghouse.Infotogo@gallaudet.edu

http://clerccenter.gallaudet.edu

SEE Center for the Advancement

of Deaf Children

PO Box 1181

Los Alamitos, CA 90720

(562) 430-1467 (voice/TDD)

(562) 795-6614 (fax)

seectr.aol.com

http://www.seecenter.org

2,4

SHHH: Self Help for Hard of

Hearing People

7910 Woodmont Ave.,

Ste. 1200

Bethesda, MD 20814

(301) 657-2248

(301) 657-2249 (TDD)

(301) 913-9413 (fax)

National@shhh.org

http://www.shhh.org

1,2,4,5,6

Telecommunications for the

Deaf, Inc.

8630 Fenton St., Ste. 604

Silver Spring, MD 20910-3803

(301) 589-3786

(301) 589-3006 CTDD)

(301) 589-3797 (fax)

info@tdi-online.org

http://www, tdi-online.org

1,2,6,7

The Canadian Hearing Society

271 Spadina Rd.

Toronto, ON CAN M5R 2V3

(416) 964-9595

(416) 964-0023 (TDD)

(416) 928-2525 (fax)

info@chs.ca

http://www.chs.ca

1,2,3,4,5,6,7

The Learning to Listen

Foundation

Auditory Verbal Therapy

Phillips House

North York General Hospital

10 Buchan Ct.

Toronto, ON CAN M2J IV2

(416) 491-4648

(416) 491-7215 (fax)

westabro@nygh.on.ca

http://www.learningtolisten.org

1,2,3,4,6; auditory-verbal

services for children who are

deaf and hard of hearing and

their families; professional

education

National Cued Speech

Association (NCSA)

23970 Hermitage Rd.

Cleveland, OH 44122-4008

(216) 292-6213 (voice/TDD)

(800) 459-3529 (voice/TDD)

cuedspdisc@aol.com

http://www.cuedspeech.org

1,2,3,4,5,6,7

HEART DISORDERS

American Heart Association

7272 Greenville Ave.

Dallas, TX 75231-4596

(800) 242-8721

(214) 706-1179

(214) 706-2139 (fax)

inquires@heart.,org

http://www.americanheart.org

2,5,6,7; Spanish Materials

CHASER: Congenital Heart

Anomalies--Support, Education,

& Resources, Inc.

2112 N. Wilkins Rd.

Swanton, OH 43558

(419) 825-5575

(419) 825-2880 (fax)

chaser@compuserv.com

myer106w@cdc.gov

http://www.csun.edu/~hfmth006/chaser

1,2,3,4,7,9

Children's Heart Association for

Support and Education

c/o Cardiac Clinic

Hosp. for Sick Children

Cathy Sikora

555 University Ave.

Toronto, ON CAN S5G 1X8

(416) 813-5848

(416) 813-5582 (fax)

1,2,3,4,8,9

Kids With Heart National

Association for Children's Heart

Disorders, Inc.

1578 Careful Dr.

Green Bay, WI 54304-2941

(800) 538-5390 (phone/fax-outside

US only)

(920) 498-0058 (phone/fax-outside

US)

kdswhrit@execpc.com

2,3,4,7,9

HEMANGIOMA

See: Craniofacial Disorders

HEMIDYSPLASIA, UNILATERAL

See: Ichthyosis

HEMIFACIAL MICROSOMIA

See: Goldenhar Syndrome

HEMIHYPERTROPHY

See: Beckwith-Wiedeman

Syndrome

HEMIPLEGIA, ALTERNATING

See also: Epilepsy; Seizure

Disorders

International Foundation for

Alternating Hemiplegia

of Childhood

239 Nevada St.

Redwood City, CA 94062

(650) 365-5798 (phone/fax)

laegan@aol.com

http://www.ahckids.org

1,2,8

HEMISPHERECTOMY

See: Rasmussen Syndrome

HEMOLYTIC ANEMIA

See: Cooley Anemia

HEMOLYTIC-UREMIC

SYNDROME

See: Kidney Disorders

HEMOPHAGOCYTIC

LYMPHOHISTIOCYTOSIS

See: Histiocytosis

HEMOPHAGOCYTIC

RETICULOSIS

See: Histiocytosis

HEMOPHILIA

National Hemophilia Foundation

116 W.32nd St., 11th Fl.

New York, NY 10001-3212

(800) 424-2634

(212) 328-3700

(212) 328-3777 (fax)

info@hemophilia.org

http://www.hemophilia.org

1,2,4,5,6,7,8; Spanish

materials

World Federation of Hemophilia

1425 Rene Levesque Blvd. W.

Ste. 1010

Montreal, QUE CAN H3G 1T7

(514) 875-7944

(514) 875-8416 (fax)

http://www.wfh.org

wfh@wfh.org

1,2,4,6,8; worldwide referrals;

guide for travelers

HEMORRHAGIC NODULAR

PURPURA

See: Fabry Disease

HEMORRHAGIC

TELANGIECTASIA,

HEREDITARY (HHT)

Hereditary Hemorrhagic

Telangiectasia (HHT) Foundation

International, Inc.

PO Box 8087

New Haven, CT 06530

(800) 448-6389

hhtinfo@hht.org

http://www.hht.org

1,2,3,5,6,8

HEPATIC DUCTULAR

HYPOPLASIA, SYNDROMATIC

See: Alagille Syndrome

HEPATOPHOSPHORYLASE

DEFICIENCY GLYCOGENOSIS

See: Glycogen Storage

Diseases; Muscular Dystrophy

HEREDITARY KIDNEY DISEASES

See: Kidney Diseases,

Hereditary

HEREDITARY LEPTOCYTOSIS

See: Cooley Anemia

HEREDITARY NONPOLYPOSIS

COLORECTAL CANCER,

See: Colon Cancer, Hereditary

HERMANSKY-PUDLAK

SYNDROME

See also: Albinism &

Hypopigmentation; Visual

Impairments

Hermansky-Pudlak Syndrome

Network Inc.

One South Rd.

Oyster Bay, NY 11771

(800) 789-9477

(516) 922-3440

(516) 922-4022 (fax)

hpsnet@worldnet.att.net

http://www.hpsnetwork.org

1,2,3,6, 7,9; Includes help for

families struggling with

Chediak Higashi syndrome

HERMAPHRODITISM

See also: Genitalia, Ambiguous

Intersex Society of North America

PO Box 31791

San Francisco, CA 94131

(415) 575-3885

(415) 252-8202 (FAX)

info@isna.org

http://www.isna.org

1,2,3,5,7

HERNIA, DIAPHRAGMATIC

CHERUBS The Association Of

Congenital Diaphragmatic

Hernia Research, Advocacy, and

Support.

PO Box 1150

Creedmoor, NC 27522

(919) 693-8158

(877) 403-1944

(815) 425-9155 (fax)

info@cherubs-cdh.org

http://www.cherubs-cdh.org

1,2,3,4,5,6,7,9

HERS DISEASE

See: Glycogen Storage

Diseases; Muscular Dystrophy

HIBSCHSPRUNG DISEASE

See: Intestinal Pseudo-Obstruction

Syndrome

HISTIOCYTOSIS

See also: Growth Disorders;

Liver Disorders; Lung Diseases;

Pituitary Tumors

Histiocytosis Association of

America

302 N. Broadway

Pitman, NJ 08071

(800) 548-2758 (US and

Canada)

(856) 589-6606

(856) 589-6614 (fax)

histiocyte@aol.com

http://www.histio.org

1,2,3,4,6,8,9; Spanish

materials

HIV

See: AIDS

HODGKIN DISEASE

See: Leukemia

HOLOPROSENCEPHALY

See also: Craniofacial

Disorders

The Carter Centers for Brain

Research in Holoprosencephaly

and Related Malformations

c/o Dr. Nancy Clegg

Texas Scottish Rite Hospital for

Children, Dept. of Neurology

2222 Welbom St.

Dallas, TX 75219

(800) 421-1121 ext. 8411

(214) 559-8411

(214) 559-8383 (fax)

nclegg@tsrh.org

http://hpe.stanford.edu

1,2,3,4,6,7,8,9

HUMAN IMMUNODEFICIENCY

VIRUS

See: AIDS

HUNTER SYNDROME

See: Mucopolysaccharidosis;

Tay-Sachs Disease

HURLER SYNDRONUE

See: Mucopolysaccharidosis;

Tay-Sachs Disease

HURLER/SCHEIE SYNDROME

See: Mucopolysaccharidosis;

Tay-Sachs Disease

HUTCHINSON-GILPORD

SYNDROME

See: Progeria

HUTCHINSON-WEBER-PEUTZ

SYNDROME

See: Colon Cancer, Hereditary;

Polyposis

HYDROCEPHALUS

Hydrocephalus Association

870 Market St., Ste. 705

San Francisco, CA 94102

(415) 732-7040

(415) 732-7044 (fax)

hydroassoc@aol.com

http://www.neurosurgery.mgh.harvard.edu/ha/

1,2,3,4,5, 7; Spanish materials

Hydrocephalus Support

Group, Inc.

PO Box 4236

Chesterfield, MO 63006-4236

(636) 532-8228

(636) 995-4108 (fax)

dhydrobuff@aol.com

1,2,3,4,5,6

National Hydrocephalus

Foundation

12413 Centralia Rd.

Lakewood, CA 90715-1623

(562) 402-3523

(562) 924-6666 (fax)

hydrobrat@earthlink.net

http://www.nhfonline.org

1,2,3,4,5,7; videos and

cassettes available

HYDROCEPHALUS,

OBSTRUCTIVE

See: Dandy-Walker Syndrome

HYPERAMMONEMIA

See: Urea Cycle Disorders

HYPERBILIRUBINEMIA

See: Kemicterus

HYPERCALCEMIA SYNDROME,

INFANTILE, IDIOPATHIC

See: Williams Syndrome

HYPERCALCEMIA-SUPRAVALVAR

AORTIC

STENOSIS

See: Williams Syndrome

HYPERCYSTINURIA

See: Cystinuria

HYPERGLYCINEMIA WITH

KETOACIDOSIS AND

LEUKOPENIA

See: Acidemia, Organic

HYPERLEXIA

See: Autism

Canadian Hyperlexia Association

300 John St.

PO Box 87673

Thornhill, ON CAN L3T 7R3

(905) 886-8364

(905) 886-4624 (fax)

cha@ican.net

http://www.home.ican.net/~cha

1,2,3,4,5

American Hypeliexia Association

195 W. Spangler, Ste. B

Elmhurst IL. 60126

(630) 415-2212

(630) 530-5909 (fax)

webmaster@hyperlexia.org

http://www.hyperlexia.org

1,3,6

HYPERUPODEMA

See: Autoimmune Disorders

HYPEROXALURIA

See: Oxalosis & Hyperoxaluria

HYPERTELORISM/

HYPOSPADIUS SYNDROMES

See: Opitz Syndrome

HYPERTHERMIA OF

ANESTHESIA

See: Malignant Hyperthermia

HYPERTHYROID MYOPATHY

See: Muscular Dystrophy;

Thyroid Disorder

HYPERURICEMIA-CHOREOATH

ETOSIS-SELF-MUTILATION

SYNDROME

See: Lesch-Nyhan Disease

HYPERURICEMIA, HEREDITARY

See: Lesch-Nyhan Disease

HYPODONTIA AND

NAIL DYSGENESIS

See: Ectodermal Dysplasias

HYPOERYTHEMIA,

PROGRESSIVE

See: Anemia, Aplastic

HYPOGAMMAGLOBULINEMIA

See: Immune Disorders

HYPOMELANOSIS OF ITO

See: Ectodermal Dysplasias;

Epilepsy; Incontinentia

Pigmenti; Vitiligo

HYPOMYELINATION

See: Myelin Disorders

HYPOPARATHYROIDISM

See also: Panathyroid

Disorders

Hypoparathyroidism

Association, Inc.

2835 Salmon St.

Idaho Fall, ID 83406

(208) 524-3857

(208) 524-2619 (fax)

http://www.hypopanathyroidism.org

1,2,3

HYPOPIGMENTATION

See: Albinism &

Hypopigmentafion; Vitiligo

HYPOPLASIA OF THE

CORPUS CALLOSUM

See: Agenesis of the Corpus

Callosum

HYPOPLASTIC ANEMIA

See: Anemia, Aplastic

HYPOPLASTIC LEFT

HEART SYNDROME

See: Heart Disorders

HYPOSPADIUS/HYPERTELORIS

M SYNDROMES

See: Opitz Syndrome

HYPOTHROID MYOPATHY

See: Muscular Dystrophy;

Thyroid Disorders

HYPOTHYROIDISM,

CONGENITAL

See: Growth Disorders;

Thyroid Disorders

HYPOTONIA, BENIGN

CONGENITAL

See: Spinal Muscular Atrophy

I-CELL DISEASE

See: Mucopolysaccharidosis;

Tay-Sachs Disease

ICHTHYOSIFORM

ERYTHRODERMA-DEAFNESS-KERATITIS

See: Ectodermal Dysplasias

ICHTHYOSlS

FIRST: Foundation for Ichthyosis

and Related Skin Types

650 N. Cannon Ave., Ste. 17

Lansdale, PA 19446

(800) 545-3286

(215) 631-1411

(215) 631-1413 (fax)

info@scalyskin.org

http://www.scalyskin.org

1,2,3,4,6, 7,8,9; Spanish

materials

IDIOPATHIC

THROMBOCYTOPENIA

PURPURA (ITP)

See: Purpura, Idiopathic

Thrombocytopenia (ITP)

IDIOSYNCRATIC PORPHYRIA

See: Porphyria

ILEOSTOMY

See: Ostomy

ILLNESS, TERMINAL

Children's Hospice International

901 North Pitt St. Suite 230

Alexandria, VA 22314

(800) 2-4-CHILD (242-4453)

(703) 684-0330

(703) 684-0226 (fax)

chiorg@aol.com

http://www.chionline.org

1,2,4,6,7

IMMUNE DEFICIENCY

See: Immune Disorders

IMMUNE DISORDERS

See also: Autoimmune

Disorders

Immune Deficiency Foundation

40 W, Chesapeake Ave.,

Ste. 308

Towson, MD 21204

(800) 296-4433

(410) 321-6647

(410) 321-9165 (fax)

idf@primaryimmune.org

http://www.primaryirnmune.org

1,2,4,5,6, 7,8,9; Spanish

materials

IMPERFORATE ANUS

See: Anorectal Malformations

INCLUSION BODY MYOSTISlS

See: Immune Disorders

INCONTINENCE

National Association For

Continence

PO Box 8310

Spartanburg, SC 29305

(800) 252-3337

(864) 579-7900

(864) 579-7902 (fax)

memberservices@nafc.org

http://www.nafc.org

1,2,7; Spanish materials

Simon Foundation for Continence

PO Box 815

Wilmette, IL 60091

(800) 237-4666

(847) 864-3913

(847) 864-9758 (fax)

simoninfo@simonfoundation.org

http://www.simonfoundation.org

1,2,4,5,6, 7; French and Spanish

material

INCONTINENTIA PIGMENTI

See also: Ectodermal

Dysplasias

National Incontinentia

Pigmenti Foundation

30 E. 72th St., 16th Fl.

New York, NY 10021

(212) 452-1231

(212) 452-1406 (fax)

ipif@ipif.org

http://imgen.bcm.tmc.edu/nipf

1,2,3,4,5,8; Informational

materials in 11 different

languages, including English,

Spanish, French, Italian,

Russian, Portuguese, Chinese,

Japanese, and others.

INCONTINENTIA PIGMENTI

ACHROMIANS

See: Ectodermal Dysplasias;

Epilepsy; Incontinentia

Pigmenti

INDIA RUBBER SKIN

See: Ehlers-Danlos Syndrome

INFANTILE FACIO-SCAPULO-HUMERAL

MUSCULAR

DYSTROPHY

See: Facio-Scapulo-Humeral

Muscular Dystrophy

INFANTILE HYPERCALCEMIA

SYNDROME, IDIOPATHIC

See: Williams Syndrome

INFANTILE SPASMS

See: Epilepsy

INTESTINAL NEURONAL

DYSPLASIA

See: Intestinal Pseudo-Obstruction

Syndrome

INTESTINAL POLYPOSIS

See: Colon Cancer, Hereditary;

Polyposis

INTESTINAL POLYPOSIS-CUTANEOUS

PIGMENTATION

SYNDROME

See: Colon Cancer, Hereditary;

Polyposis

INTESTINAL PSEUDO-OBSTRUCTION

SYNDROME

International Foundation For

Functional Gastrointestinal

Disorders (IFFGD)

158 Pleasant St.

North Andover, MA 01845

(800) 394-2747

(978) 685-4477

(978) 685-4488 (fax)

aanastas@iffgd.org

http://www.iffgd.org

1,2,3,4,6,8,9

Association of Gastrointestinal

Motility Disorders, Inc.

AGMD International Corporate

Hdqtrs.

11 North St.

Lexington, MA 02420

(781) 861-3874

(781) 861-7834 (fax)

AGMDInc@aol.com

INTRAHEPATIC BILE

DUCT PAUCITY

See: Alagille Syndrome

INTRAUTERINE GROWTH

RETARDATION

See: Growth Disorders

ISOVALERIC ACIDEMIA (IVA)

See: Acidemia, Organic

ISOVALERYL-COA

CARBOXYLASE DEFICIENCY

See: Acidemia, Organic

JANSKY-BIEL SCHOWSKY

DISEASE

See: Batten Disease; Tay-Sachs

Disease

JEGHERS SYNDROME

See: Colon Cancer, Hereditary;

Polyposis

JERVELL & LANG-ENIELSEN

SYNDROME

See: Hearing Impairments;

Long Q- T Syndrome

JEUNE SYNDROME

See: Growth Disorders

JOHANSON-BLIZZARD

SYNDROME

See: Craniofacial Disorders;

Ectodermal Dysplasias; Growth

Disorders; Hearing

Impairments; Short Stature

JORGENSON SYNDROME

See: Ectodermal Dysplasias

JOUBERT SYNDROME

See also: Apnea, Sleep

Joubert Syndrome Foundation

12348 Summer Meadow Rd.

Rock, MI 49880-9552

(906) 359-4707

(906) 359-4205 (fax)

joubert@portup.com

http://www.joubertfoundation.com

1,2,3,4,5,5,9

JUVENILE GOUT-CHOREOATHETOSIS-MENTAL

RETARDATION SYNDROME

See: Lesch-Nyhan Disease

KALLMAN SYNDROME

See: Cleft Palate; Growth

Disorders; Hearing

Impairments; Kidney Disorders

KAST SYNDROME

See: Cancer; Oilier Disease

KEARNS-SAYRE SYNDROME

See: Heart Disorders;

Mitochondrial Disorders;

Retinitis Pigmentosa; Visual

Impairments

KERATITIS FOLLICULARIS

SPINULOSA DECALVANS

See: Ectodermal Dysplasias;

Ichthyosis

KERATITIS-ICHTHYOSIS-DEAFNESS

(KID) SYNDROME

See: Ectodermal Dysplasias;

Ichthyosis; Hearing Impairments

KERNICTERUS

See also: Cerebral Palsy

Parents of Infants and Children

with Kernicterus (PICK)

517 Brentwood Dr.

Birmingham, AL 35226

Contact: Karen Dixon

(205) 979-2021

ktdixon1@home.com

http://www.bilirubin.net

1,2,3,4,6,7,8,9

KETOACIDURIA

See: Maple Syrup Urine Disease

KETOTIC HYPERGLYCINEMIA

See: Acidemia, Organic

KID SYNDROME

See: Ectodermal Dysplasias;

Ichthyosis; Hearing Impairments

KIDNEY DISEASES,

HEREDITARY

See also: Cystinosis; Kidney

Disorders, Hereditary; Oxalosis

& Hyperoxaluria

Hereditary Nephritis Foundation

1390 W. 6690 S., #202H

Murray, UT 84123

(801) 262-5901 (phone/fax)

http://www.cc.utah.edu/~da6202/HNF.htm

1,3,4

KIDNEY DISORDERS

See also: Cystinosis; Kidney

Diseases, Hereditary;

Oxalosis & Hyperoxaluria

American Association of Kidney

Patients

100 S. Ashley Dr., Ste. 280

Tampa, FL 33602

(800) 749-2257

(813) 223-7099

(813) 223-0001 (fax)

info@aakp.org

http://www.aakp.org

1,2,4,5,6,7,8

American Kidney Fund

6110 Executive Blvd., Ste. 1010

Rockville, MD 20852

(800) 638-8299

(301) 881-3052

(301) 881-0898 (fax)

helpline@akfinc.org

http://www.arbon.com/kidney

1,2,6,8; Spanish materials,

financial assistance for

treatment-related expenses

Child & Youth Clinical Trials

Network (CYCTN)

Spencer Russ, Acting Director

Cheo-Research Institute

401 Smith Rd.

Ottawa, ON CAN K1H 8L1

(613) 737-4098

(613) 738-4800 (fax)

http://www.cpkdrc.org

2,4

Kidney Foundation of Canada

300-5165 Sherbrooke St. W.

Montreal, PQ CAN H4A IT6

(514) 369-4806

(514) 369-2472 (fax)

kathleen@kidney.ca

http://www.kidney.ca

2,3,4,5,8; French/Chinese/

Punjab/materials

National Kidney Foundation

30 E. 33rd St., 11th Fl.

New York, NY 10016

(800) 622-9010

(212) 889-2210

(212) 779-0068 (fax)

http://www.kidney.org

1,2,4,5,6,7,8

The PKD Foundation (formerly

Polycystic Kidney

Research Foundation)

4901 Main St., Ste. 200

Kansas City, MO 64112-2634

(800) 753-2873

(816) 931-2600

(816) 931-8655 (fax)

pkdcure@.pkdcure.org

http://www.pkdcure.org

1,2,5,5,7,8;

Spanish/French/German/

Italian/Japanese materials

KIDNEY STONES

See: Cystinuria

KINKY HAIR DISEASE

See: Menkes Disease

KIRGHIZIAN

DERMATOOSTEOLYSlS

See: Ectodermal Dysplasias

KLINEFELTER SYNDROME

49 XXXXY Syndrome Association

100O1 NE 74th St.

Vancouver, WA 98662-3801

(360) 892-7547

kimbj@juno.com

1,3

Klinefelter's Syndrome

Association, Inc. 47, XXX and 47,

XYY

PO Box 2119

Loomis, CA 95650

(916) 660-1599

(888) 999-9428 (toll free line)

(916) 660-1899 (fax)

info@genetic

http://www.genetic.org

1,2,3,4,5,6, 7,8,9; Spanish

materials

Klinefelter's Syndrome

Association of America

N5879 30th Rd.

Pine River, WI 54965

(920) 987-5782

1,2,3,5

KLIPPEL-TRENAUNAY SYNDROME

See also: Nevi, Giant Congenital;

Sturge-Weber Syndrome;

Klippel-Trenaunay Support Group

c/o Judy Vessey

5404 Dundee Rd.

Edina, MN 55436

(652) 925-2596

http://www.k-t.org

jvessey@qwest.net

1,2,3,4,5,6,9

KLIPPEL-TRENAUNAY-WEBER

SYNDROME

See: Klippel- Trenaunay Syndrome

KRABBE DISEASE

See: Leukodystrophy, TaySachs

Disease

KUFS DISEASE

See: Batten Disease; Tay-Sachs

Disease

KUGELBERG-WELANDER

DISEASE

See: Spinal Muscular Atrophy

KUSSMAUL-ANDRY PARAYLSIS

See: Guillain-Barre Syndrome

KYPHOSIS

See: Scoliosis

LACTATE DEHYDROGENASE

DEFICIENCY

See: Muscular Dystrophy

LACTIC ACIDOSIS

See also: Glutaric Aciduria,

Type I; Metabolic Disorders

Lactic Acidosis Support Group

1620 Mable Ave.

Denver, CO 80229

(303) 287-4953

2,3,4,9

LAMBERT-EATON SYNDROME

See: Muscular Dystrophy

LANDOUZY-DEJERINE

MUSCULAR DYSTROPHY

See: Facio-Scapulo-Humeral

Muscular Dystrophy

LANDRY ASCENDING PARAYLSIS

See: Guillain-Barre Syndrome

LANGER-GIEDION SYNDROME

See: Ectodermal Dysplasias;

Exostoses, Multiple Hereditary

LANGERHANS CELL

HISTIOCYTOSIS

See: Histiocytosis

LATEX ALLERGY

Latex Allergy Information Service

176 Roosevelt Ave.

Torrington, CT 06790

(860) 482-6869

(860) 482-2294 (fax)

debilan1@cs.com

http://www.latexallergyhelp.com

1,2,4,6

LAURENCE-MOON SYNDROME

See: Laurence-Moon-Bardet-Biedl

Syndrome

LAURENCE-MOON-BARDET-BIEDL

SYNDROME (LMBBS)

See also: Kidney Disorders;

Retinitis Pigmentosa

Laurence-Moon-Bardet-Biedl

Syndrome Network

(LMBBS)

Executive Plaza 1

11350 McComick Rd., Ste. 800

Hunt Valley, MD 21031

(888) 683-5555 (toll free)

(800) 683-5551 (TDD)

(410) 785-1414

(410) 771-9470 (fax)

Attention: Ridia Anderson

mmarzullo@blindness.org

http://www.blindness.org

1,2,3

LE JEUNE SYNDROME

See: Cri Du Chat Syndrome

LEARNING DISABILITIES

See also: Attention Deficit

Disorder; Dyslexia

Learning Disabilities Association

of America

4156 Library Rd.

Pittsburgh, PA 15234

(412) 341-1515

(412) 344-0224 (fax)

ldanatl@usaor.net

http://www.ldanatl.org

1,2,4,5,6, 7; Spanish materials

Learning Disabilities Association

of Canada

323 Chapel St., Ste. 200

Ottawa, ON CAN K1N 772

(613) 238-5721

(613) 235-5391 (fax)

information@ldac-taac.ca

http://www.ldac-taac.ca

1,2,4,5,6,7,8; French materials

Learning Disabilities Association

of New York City, Inc.

27 West 20th St., Ste. 303

New York, NY 10011

(212) 645-6730

(212) 924-8896 (fax)

2,4

National Center for

Learning Disabilities

381 Park Ave. S, Ste. 1401

New York, NY 10016

(888)575-7373

(212) 545-7510

(212) 545-9665 (fax)

http://www.ncld.org

1,2,4,7

Parents of Gifted/LD Students

2420 Eccleston St.

Silver Spring, MD 20902-4925

(301) 986-1422

(301) 681-4884 (fax)

jilmeyers@aol.com

http://www.geocities.com/athens/1105/gtld.htm

1,2,3,4,5

Resources for Children with

Special Needs, Inc.

200 Park Ave. S., Ste. 816

New York, NY 10003

(212) 677-4650

(212) 254-4070 (fax)

info@resourcesnyc.org

http://resourcesnyc.org

2,4

LEIGH'S DISEASE

See: Lactic Acidosis;

Mitochondrial Disorders

LENZ-PASSARGE DYSPLASIA

See: Ectodermal Dysplasias

LEPTOCYTOSIS, HEREDITARY

See: Cooley Anemia

LEPTOMENINGEAL

ANGIOMATOSIS

See: Sturge-Weber Syndrome

LESCH-NYHAN DISEASE

International Lesch-Nyhan

Disease Association

11042 Femdale St.

Philadelphia, PA 19116

(215) 677-4206

2,3

International Lesch-Nyhan

Disease Registry

Matheny School and Hospital

Institute, for Research in

Developmental Disabilities

PO Box 339

Peapack, NJ 07977

(908) 234-0618

(908) 234-0963 (fax)

research@matheny.org

http://www.matheny.org

2,3,9

Lesch-Nyhan Registry

Dept. of Psychiatry

New York Univ., School of

Medicine

550 First Ave.

New York, NY 10016

(212) 263-6458

(212) 629-9523 (fax)

andersnl@is2.nyu.edu

LETTERER-SIWE DISEASE

See: Histiocytosis

LEUKEMIA

See also: Bone Marrow

Transplant; Cancer

Leukemia Research Fund

of Canada

Attn:Maureen E. Thornton

936 The East Mall

Toronto, ON CAN m9B 6J9

(800) 268-2144 (Canada only)

(416) 661-9541

(416) 661-7799 (fax)

lrfc@lrfc.org

http://www.leukemia.ca

1,2,4,5,6

Leukemia & Lymphoma Society

1311 Mamaroneck Ave,, 3rd Fl.

White Plains, NY 10605

(800) 955-4572

(914) 949-5213

(914) 949-6691 (fax)

http://www.leukemialymphoma.org

1,2,3,4,5,6, 7,8; Spanish

materials.

LEUKODYSTROPHY

See also: Myelin Disorders,

Tay-Sachs Disease

United Leukodystrophy

Foundation

2304 Highland Dr.

Sycamore, IL 60178

(800) 728-5483

(815) 895-3211

(815) 895-2432 (fax)

ulf@tbcnet.com

http://www.ulf.org

1,2,3,4,6,6,9; Spanish/French

materials

LEUKODYSTROPHY,

METACHROMATIC

See: Leukodystrophy, TaySachs

Disease

LIMB DISORDERS

See also: Amputation

Superkids: A Newsletter for

Families and Friends of Children

with Limb Differences

60 Clyde St.

Newton, MA 02460-2250

http://www.superkids.org

1,3

LIMB-GIRDLE

MUSCULAR DYSTROPHY

See: Muscular Dystrophy

LIMIT DEXTRINOSlS

See: Glycogen Storage

Diseases; Muscular Dystrophy

LIPID HISTIOCYTOSIS

See: Niemann-Pick Disease

LIPIDOSIS, CEREBROSIDE

See: Gaucher Disease

LIPOFUSCINOSES, NEURONAL

CEROID

See: Batten Disease

LIPOID HYPERPLASIA,

CONGENITAL

See: Adrenal Disorders

LIPOMYELOMENINGOCELE

Lipomyelomeningocele Family

Support Network

321 Hopewell St.

Birdsboro, PA 19508

(610)582-5937

http://www.home.ptd.net/~ifsn

gmcafee@ptd.net

LISSENCEPHALY

See also: Epilepsy

Lissencephaly Network, Inc.

10408 Bitterroot Ct.

Fort Wayne, IN 46804

(219) 432-4310 (voice/fax)

lta1@is2.nyu.edu

http://www.lissencephaly.org

1,2,3,4,9

The Lissencephaly Network,

Inc.--Canada Division

1549 Regent St.

Regina, SK CAN S4N 1S1

(219) 432-4310

http://www.lissencephaly.org

1,2,3,4,6,8,9; toy-lending

library

LIVER DISEASE AND

TRANSPLANT (PEDIATRICS)

See also: Liver Disorders

Children's Liver Alliance

(formerly the Biliary Atresia &

Liver Transplant Network BALT)

3835 Richmond Ave., Box 190

Staten Island, NY 10312-3828

(718) 987-6200 (voice/fax)

Livers4Kids@earthlink.net

http://www.livertx.org

1,2,3, 4,5,6, 7,9; Spanish

materials

LIVER DISORDERS

American Liver Foundation

75 Maiden Ln., Ste. 603

New York, NY 10038-4810

(800) 223-0179,

(800) GO-LIVER,

(888)4-HEP-ABC,

(212) 668-1000,

(212) 483-8179(fax)

webmail@liverfoundation.org

http://www.liverfoundation.org

1,2,4,5, 7,6,9; Spanish materials

Canadian Liver Foundation

2235 Sheppard Ave. E.,

Ste. 1500

Toronto, ON CAN M2J 585

(800) 563-5483 (Canada only)

(416) 491-3353

(416) 491-4952 (fax)

clf@liver.ca

http://www.liver.ca

1,2,3,4,5,6; French materials

LIVER PHOSPHORYLASE

DEFICIENCY

See: Glycogen Storage

Diseases; Muscular Dystrophy

LOBSTEIN DISEASE, TYPE 1

See: Osteogenesis Imperfecta

LONG QT SYNDROME

See also: Heart Disorders

International Long QT

Syndrome Registry

PO Box 653

University of Rochester

Medical Ctr.

Rochester, NY 14642-8653

(716) 275-5391

(716) 473-2751 (fax)

4,9

Sudden Arrhythmia Death

Syndromes (SADS) Foundation

508 E. South Temple, Ste. 20

Salt Lake City, UT 84102

(800) 786-7723

(801) 531-0945 (fax)

sads@sads.orgt

http://www.sads.org

1,2,3,4.6,8,9; Spanish materials

LORDOSIS

See: Scoliosis

LOWE SYNDROME

See also: Arthritis; Cystinuria,

Glaucoma; Growth Disorders;

Kidney Disorders; Metabolic

Disorders; Visual Impairments

Lowe Syndrome Association

222 Lincoln St.

W. Lafayette, IN 47906

(765)743-3634

info@lowesyndrome.org

http://www.lowesyndrome.org

1,2,3,6,8,9

LOWE-BICKEL SYNDROME

See: Lowe Syndrome

LOWE-TERRY-MACHLACHLAN

SYNDROME

See: Lowe Syndrome

LUNG DISEASES

American Lung Association

1740 Broadway, 14th Fl.

New York, NY 10019

(800) LUNG-USA

(212) 315-8700

(212) 265-5642 (fax)

(212) 315-8872 (fax)

info@lungusa.org

http://www.lungusa.org

2,4,5,6, 7,8; Spanish materials

Canadian Lung Association

Attn: Deirdre Freiheit

3 Raymond St Ste 300

Ottowa, ON CAN K1R 1A3

(613) 564-6411

(613) 747-7430 (fax)

info@lung.ca

http://www.lung.ca

2,4,5,5,7

LUPUS ERYTHEMATOSIS

Lupus Foundation of

America

1300 Piccard Dr., Ste. 200

Rockville, MD 20850

(888) 385-8787

(301) 670-9292

(301) 670-9486 (fax)

lupusinfo@aol.com

http://www.lupus.org

1,2,5,7.8 Spanish materials

SLE Foundation

149 Madison Ave., Ste. 205

New York, NY 10016

(212) 685-4118

(212) 545-1843 (fax)

lupus@lupusny.org

http://www.lupusny.org

1,2,3,4,5,6, 7,8; Spanish

materials

Lupus Canada

PO Box 64034

5512 4 St., NW

Calgary, AB CAN T2K 6J1

(800) 661-1468,

(403) 274-5599 (phone & fax)

lupuscan@cadvision.com

http://www.lupuscanada.org

2,4,5,6, 7,8; French materials

LYME DISEASE

American Lyme Disease

Foundation, Inc.

Mill Pond Offices.

293 Rte. 100

Somers, NY 10589

(914) 277-6970

(914) 277-6974 (fax)

inquire@aldf.com

http://www.aldf.com

1,2,4,6,8.9

Lyme Disease Foundation

1 Financial Plaza, Gold Bldg.,

18th Fl.

Hartford, CT 06103-2610

(800) 886-5953 (info line)

(860) 525-2000

(860) 525-8425 (voice/fax)

lymefnd@aol.com

http://www.lyme.org

1,2,4,6, 7; Spanish materials;

May of 2000, in London.

Lyme Disease Resource Center

PO Box 1423

Ukiah, CA 95482

(707) 468-8460

pcm@pacific.net

1,2,4,6,7

LYMPHANGIOMA

AboutFace International

123 Edwards St. Ste 1003

Toronto, ON CAN MSG1E2

(800) 665-3223

(416) 597-2229

(416) 944-2488 (fax)

abtface@interlog.com

http://www.interlog.com/abtface

1,2,3,4,5,6,7

LYMPHEDEMA

National Lymphedema Network

Latham Square

1611 Telegraph Ave., Ste. 1111

Oakland, CA 94612-2138

(800) 541-3259

(510) 208-3110 (fax)

nln@lymphnet.org

http://www.lymphnet.org

1,2,6,7,9

LYMPHOHISTIOCYTOSIS,

FAMILIAL ERYTHROPHAGOCYTIC

See: Histiocytosis

LYMPHOHISTIOCYTOSIS,

HEMOPHAGOCYTIC

See: Histiocytosis

LYMPHOHISTIOCYTOSIS,

MALIGNANT

See: Cancer; Histiocytosis

LYMPHOMA

See: Leukemia

LYSOSOMAL STORAGE

DISEASES

See: Fabry Disease; Gaucher

Disease;

Mucopolysaccharidosis,

Niemann-Pick Disease; Pompe

Disease; Tay-Sachs

MACULAR DISEASES

See also: Retinitis Pigmentosa;

Usher Syndrome; Visual

Impairments

Association for Macular Diseases

210 E. 64th St.

New Yorkf NY 10021

(212) 605-3719

(212) 605-3795 (fax)

http://www.macula@macula.org

macula@macula.org

1,2,4

Macular Degeneration Foundation

PO Box 9752

San Jose, CA 95157

(888) 633-3937

(408) 260-1335

(408) 260-1336

eyesight@eyesight.org

http://www.eyesight.org

1,2,4,9

Stargardt Macular Dystrophy and

Other Juvenile Macular

Dystrophies Self Help Network

c/o Macular Degeration

International

6700 N. Oracle Rd, Ste. 505

Tucson, AZ 85704

(800) 393-7634

(520) 797-2525

(520) 797-8018 (fax)

info@maculardegeneration.org

http://www.maculardegeneration.org

1,2,3,4,6,8

MACULAR DYSTROPHIES,

JUVENILE

See: Macular Diseases

MAFFUCCI SYNDROME

See: Cancer; Ollier Disease

MALE SEX

CHROMOSOME DISORDERS

See Klinefelter Syndrome

MALIGNANT HYPERTHERMIA

Malignant Hyperthermia

Association

200 Elizabeth St.

CCRW, Rm. 2-834

Toronto, ON CAN MSG 2C4

(416) 340-3238

(416) 340-4960 (fax)

http://www.mhacanada.org

1,2

Malignant Hyperthermia

Association otthe United States

39 East State St.

PO Box 1069

Sherburne, NY 13460

(800) 986-4287,

(607) 674-7901,

(800) 674-7910 (fax)

mhaus@norwich.net

http://www.mhaus.org

1,2,9; Spanish/Italian materials

MANDIBULOFACIAL

DYSOSTOSIS

See: Nager & Miller

Syndromes; Treacher Collins

Syndrome

MANNOSIDOSIS

See: Tay-Sachs Disease

MAPLE SYRUP URINE DISEASE

See also: Acidemia, Organic;

Metabolic Disorders

Maple Syrup Urine Disease

Family Support Group

5720 Buckfield Ct.

Fort Wayne, IN 46804

(219) 436-0137

1,2,3,6,9; parent-professional

network

MARDEN-WALKER SYNDROME

See: Cleft Palate; Connective

Tissue Disorders; Growth

Disorders

MARFAN SYNDROME

See also:Connective Tissue

Disorders; Heart Disorders;

Scoliosis

Canadian Marfan Association

Centre Plaza Postal Outlet

128 Queen St., S.

PO Box 42257

Mississauga, ON LSM 4ZO

(905) 826-3223

(905) 826-2125 (fax)

info@marfan.ca

http://www.marfan.ca

1,2,3,4,5,6,8,9

National Marfan Foundation

382 Main St.

Port Washington, NY 11050-3121

(800) 8MARFAN [862-7326]

(516) 883-8712

(516) 883-8040 (fax)

staff@marfan.org

http://www.marfan.org

1,2,3,4,5,6,7,8

MARKER X SYNDROME

See: Fragile X Syndrome

MARTEAUX-LAMY SYNDROME

See: Mucopolysaccharidosis:

Tay-Sachs Disease

MARSHALL SYNDROME,

TYPE I

See: Ectodermal Dysplasia

MARTIN-BELL SYNDROME

See: Fragile X Syndrome

MAST CELL DISEASE,

SYSTEMIC

Mastocytosis Society

433 E. 300 S.

Spanish Fork, UT 84660-2147

(801) 798-2032

(801) 794-2980 (fax)

cybermom@uswest.net

BillA@Mastocytosis.com

http://www.mastocytosis.com

1,2,5,6

MCARDLE DISEASE

See: Glycogen Storage

Diseases; Muscular Dystrophy

MCCUNE-ALBRIGHT SYNDROME

See also: Growth Disorders

MAGIC Foundation

McCune-Albright Syndrome

Division

1327 N. Harlem Ave.

Oak Park, IL 60302

(800) 362-4423

(708) 383-0808

(708) 383-0899 (fax)

mary@magicfoundation.org

http://www.magicfoundation.org

1,2,3,4,6; Spanish materials,

pen pal-program for children

MEDITERRANEAN ANEMIA

See: Cooley Anemia

MEDIUM-CHAIN ACYL-COA

DEHYDROGENASE DEFICIENCY

(MCAD)

See: Fatty Oxidation Disorder

MEDULLOBLASTOMA,

HEREDITARY

See: Brain Tumors

MEERKEREN-EHLERS-DANLOS

SYNDROME

See: Ehlers-Danlos Syndrome

MEIGE DISEASE

See: Lymphedema

MELANOLEUCODERMA

ECTODERMAL DYSPLASIAS

See: Colon Cancer, Hereditary;

Polyposis

MELAS SYNDROME

See: Growth Disorders, Lactic

Acidosis, Mitochondrial

Disorders

MELNICK NEEDLES

SYNDROME

See: Growth Disorders

MEN SYNDROME I

See: Multiple Endocrine

Neoplasia I

MENIERE'S SYNDROME

See: Balance Disorders &

Dizziness

MENINGEAL CAPILLARY

ANGIOMATOSIS

See: Sturge-Weber Syndrome

MENKES DISEASE

See also: Liver Disorders;

Metabolic Disorders

Corporation for Menkes Disease

5720 Buckfield Ct.

Fort Wayne, IN 46804

(219) 436-0137 (phone/fax)

1,2,3,6,9; Parent-professional

network.

MENTAL ILLNESS

See also: Mental

Retardation/Mental Illness

Canadian Mental Health

Association

2160 Yonge St.

Toronto, ON CAN M4S 273

(416) 484-7750

(416) 484-4617 (fax)

cmhanat@interlog.com

http://www.cmha.ca

1,2; French materials

Family Network on

Disabilities of Florida

2735 Whitney Rd.

Clearwater, FL 33760

(800) 825-5736 (FL only)

(727) 523-1130

(727) 523-8687 (fax)

fnd@fndfl.org

http://www.fndfl.org

1,2,3,4,5,6,7

Federation of Families for

Children's Mental Health

1101 King St., Ste. 420

Alexandria, VA 22314

(703) 684-7710

(703) 836-1040 (fax)

ffcmh@ffcmh.org

http://www.ffcmh.org

1,2,3,4,5,6, 7; Spanish

materials

Mental Health

Association of Colorado

6795 E. Tennessee Ave.,

Ste. 425

Denver, CO 80224

(303) 377-3040

(303) 377-4920 (fax)

http://www.MHAcolorado.org

1,2,4

National Alliance for the

Mentally III

Colonial Place Three

2107 Wilson Blvd., Ste. 300

Arlington, VA 22201

(703) 524-7600

(703) 524-9094 (fax)

NAMIOFFC@aol.com

http://www.nami.org

1,2,4,5,6,7

National Mental Health

Association

1021 Prince St.

Alexandria, VA 22314-2971

(800) 969-6642

(703) 683-9226 (FAX)

infoctr@nmha.org

http://www.nmha.org

1,2,4,5,6,7

National Mental Health Services

Knowledge Exchange Network

(KEN)

PO Box 42490

Washington, DC 20015

(800) 789-2647

(301) 984-8796 (fax)

ken@mentalhealth.org

http://www.mentalhealth.org

Parents & Children

Coping Together-PACCT

PO Box 26691

Richmond, VA 23261-6691

(800) 477-0946

(804) 559-6833

(804) 559-6835 (fax)

pacct@richmond.infi.net

The Parent Connection

PO Box 0

Santa Fe, TX 77510

(800) 839-8876

(409) 756-8321

(409) 925-7773 (fax)

Utah Parent Center

2290 E. 4500 S., Ste. 110

Salt Lake City, UT 84117

(800) 468-1160 (UT only)

(801) 272-1051

(801) 272-8907 (fax)

upc@inconnect.com

MENTAL RETARDATION

See also: Mental Illness;

Mental Retardation/ Mental

Illness

The Arc of the United States

1010 Wayne Ave., Ste. 650

Silver Spring, MD 20910

(800) 433-5255

(301) 565-3842

(301) 565-3843 (fax)

info@thearc.org

http://www.TheArc.org/

1,2,4,5,6, 7,8; Spanish

materials.

Bethphage Developmental

Disabilities

2245 Midway Rd., Ste. 300

Carrolton, TX 75006

(972) 866-9989

(972) 991-0834(FAX)

donahue@bethphage.org

http://www.bethphage.org

1,2,4

Bethphage

The Lind Center, Ste. A.

4980 S 118th St.

Omaha, NE 68137-2220

(402) 896-3884

(402) 896-1511 (fax)

mburke@bethphage.org

http://www.bethphage.org

1,2,4, children and adult family

services; adult foster care

Canadian Association for

Community Living & The Roeher

Institute

4700 Keele St.

Kinsmen Bldg., York University

North York, ON CAN M3J 1P3

(416) 661-9611

(416) 661-2023 (TDD)

(416) 661-5701 (fax)

info@roeher.ca

info@cacl.ca

http://www.cacl.ca

1,2, 4,5,6, 7; French materials

People First International

PO Box 12642

Salem, OR 97309

(503) 362-0336

(503) 587-8459 (fax)

heathd@open.org

http://www.people1.org

1,2,4, 6, 8; leadership/self-advocacy

training

Voice of the Retarded

5005 Newport Dr., Ste. 108

Rolling Meadows, IL 60008

(847) 253-6020

(847) 253-6054 (fax)

vor@compuserve.com

http://www.vor.net

1,2,3,4,5,6,7

MENTAL

RETARDATION/MENTAL

ILLNESS

See also: Mental Illness;

Mental Retardation

(AAMR) American Association on

Mental Resources

444 N Capitol St., Ste. 846

Washington, DC 20001

(800) 424-3688

(202) 387-1968

(202)387-2193 (fax)

aamr@access.digex.net

http://www.aamr.org

1,2,4,5,6

Developmental Disabilities

Nurses Association (DONA)

P.O. Box 2749

Eugene, OR 97402

(800) 888-6733

(541) 485-7372 (fax)

ddnahq@aol.com

http://www.ddna.org

1,2,4,5,5,8

National Association of the

Dually Diagnosed (NADD)

132 Fair St.

Kingston, NY 12401

(800) 331-5362

(845) 331-4336

(846) 331-4569 (fax)

thenadd@aol.com

http://www.thenadd.org

1,2,3,4,5,8,7; National,

informational, and Regional

Conferences'

MERRF SYNDROME

See: Myoclonus;

Mitochondrial Disorders

METABOLIC DISORDERS

See also: Acidemia, Organic;

Galactosemia; Lactic Acidosis;

Maple Syrup Urine Disease;

Neurotransmitter Diseases,

Pediatric; Niemann-Pick

Disease; Phenylketonuria

(PKU)

Metabolic Information Network

PO Box 670847

Dallas, TX 75367-0847

(800) 945-2188 (USA/Canada)

(214) 696-2188

(800) 955-3258 (fax, USA/

Canada)

(214) 696-3258 (fax)

mizesg@ix.netcom.com

1,9

Climb

The Quadrangle Crewe Hall

Weston Road, Crewe

Cheshire, UK CW1 6UR

(44)870700326

(44)8707700327fax)

info@climb.org.uk

http://www.climb.org.uk

1,2,3,4 (in UK);

5,6,7,8;9, English, French,

German, Spanish materials

The World Life Foundation

PO Box 571

Bedford, TX 76095-0571

(800) 289-5433

(817) 285-0216 (fax)

loubaum@airmail.net

Offers air transport for client

and one parent to facility for

metabolic disorders treatment.

METACHROMATIC

LEUKODYSTROPHY

See: Leukodystrophy; TaySachs

Disease

METAPHYSEAL DYSOSTOSIS,

TYPE B IV

See: Shwachman Syndrome

METHYLMALONIC ACIDEMIA

See: Acidemia, Organic

MICROCEPHALY

FACES-The National Craniofacial

Association

PO Box 11082

Chattanooga, TN 37401

(800) 332-2373

(423) 266-1632

(423) 267-3124 (fax)

Faces@mindspring.com

http://www.faces-cranio.org

1,2,3,6,9; financial assistance

for medical-related travel

Genetic Alliance

4301 Connecticut Ave. NW,

Ste. 404

Washington, DC 20008-2304

(202) 966-5557

(202) 966-8553 (fax)

(800) 336-GENE (4363) helpline

info@geneticalliance.org

http://www.geneticalliance.org

1,2,3,4,6,7,9; Spanish

materials.

March of Dimes Birth Defects

Foundation

1275 Mamaroneck Ave.

White Plains, NY 10605

(888) 663-4637

(914) 997-4410(fax)

resourcecenter@modimes.org

http://www.modimes.org

2,5,7,8

National Institute of Neurological

Disorders & Stroke

PO Box 5801

Bethesda, MD 20824

(800) 352-9424

(301) 496-5751

(301) 402-2186 (fax)

http://www.ninds.nih.gov

MICROPHTHALMIA

See: Anophthalmia; Visual

Impairments

MICROSOMIA, HEMIFACIAL

See: Craniofacial Disorders;

Goldenhar Syndrome

MICROTIA

See also: Craniofacial

Disorders

Microtia-Atresia Support Group

c/o Jack Gross

307 Seventh Avenue #2306

New York, NY 10001

(212) 947-0770

(212) 714-1224 (fax)

GrossInsCo@aol.com

3

MIKAELIAN SYNDROME

See: Ectodermal Dysplasias

MILLER SYNDROME

See: Nager & Miller Syndromes

MILLER-DIEKER SYNDROME

See: Lissencephaly

MILLER-FISCHER SYNDROME

See: Guillain-Barre Syndrome

MILROY DISEASE

See: Lymphedema

MITOCHONDRIAL DISORDERS

United Mitochondrial Disease

Foundation (UMDF)

PO Box 1151

Monroeville, PA 15146-1151

(412) 793-8077

(412) 793-6477 (fax)

umdf@nb.net

info@umdf.org

1,2,3,4,5,6,7,8.9

MITOCHONDRIAL MYOPATHY

See: Mitochondrial Disorders;

Muscular Dystrophy

MOEBIUS SYNDROME

See also: Craniofacial

Disorders; Limb Disorders

The Moebius Syndrome News

PO Box 147.

Pilot Grove, MO 65276

(660) 834-3406

vmccarrell@mid.mo-net

http://www.ciaccess.com/moebius

1,2,3,4,5,6,7,9

Moebius Syndrome Support Group

38883 Fox Holm Dr.

Palmdale, CA 93551

(805) 267-2570 (voice/fax)

lorit@netport.com

http://www.wincom.net/moebius/

1,2,3,6,8,9

MONOSOMY X

See: Turner Syndrome

MORQUIO SYNDROME

See: Mucopolysaccharidosis;

Tay-Sachs Disease

MORVAN DISEASE

See: Syringomyelia

MOTOR-SENSORY

NEUROPATHY, HEREDITARY

See: Charcot-Marie-Tooth

Disease

MOYAMOYA DISEASE

See: Stroke; Vascular

Malformations

MUCOLIPIDOSES

See: Mucopolysaccharidosis;

Mucolipidosis Type IV; TaySachs

Disease

MUCOLIPIDOSIS TYPE IV

See also:

Mucopolysaccharidosis; TaySachs

Disease; Visual

Impairments

ML4 Foundation

719 East 17th St.

Brooklyn, NY 11230

(718) 434-5067

(718) 859-7371 (fax)

ml4@aol.com

http://www.ml4.org

1,2,3,4,5,7,8,9

MUCOPOLYSACCHARIDOSIS

See also: Metabolic Disorders;

Tay-Sachs Disease

The National Mucopolysaccharidosis

(MPS)Society

102 Aspen Dr.

Downingtown, PA 19335

(610) 942-0100

(610) 942-7188 (fax)

presmps@aol.com

http://www.mpssociety.org

1,2,3,4,5,6,8,9; Spanish

materials

Little People of America

National Headquarters

Box 745

Lubbock, Texas 79408

(888) LPA-2001 (572-2001)

(voice/fax; call first)

(806) 797-8830 (voice/fax; call

first) Engl./Span.

LPADataBase@juno.com

http://www.lpaonline.org

1,2,3,5,6; Spanish materials

MUCOSULFATIDOSIS

See: Hearing Impairments;

Ichthyosis; Leukodystrophy;

Tay-Sachs Disease

MULTIPLE CARBOXYLASE

DEFECIENCY

See:Metabolic Disorders

MULTIPLE ENDOCRINE

NEOPLASIA I

See also: Adrenal Disorders;

Diabetes Mellitus; Thyroid

Disorders

Multiple Endocrine Neoplasia I

c/o Mrs. Cathy McMillan-Fitch

Box 100

Meota, SK CAN SOM 1X0

(306) 892-2080 (voice/fax)

hockey_freak99@hotmail.com

1,2,3

MULTIPLE SCLEROSIS

Multiple Sclerosis Society of

Canada

250 Bloor St. E, Ste. 1000

Toronto, ON CAN M4W 3P9

(800) 268-7582 (nearest division

office)

(416) 922-6065

(416) 922-7238 (fax)

info@mssociety

http://www.mssociety.ca

1,2,4,5,6,7,8

National Multiple Sclerosis

Society

733 3rd Ave., 6th Fl.

New York, NY 10017-3288

(800) 344-4867

(212) 986-3240

(212) 986-7981 (fax)

nat@nmss.org

http://www.nmss.org

1,2,4,5,8; Spanish materials

MULTIPLE SULFATASE

DEFICIENCY

See: Hearing Impairments;

Ichthyosis; Leukodystrophy;

Tay-Sachs Disease

MUSCLE

PHOSPHOFRUCTOKINASE

DEFICIENCY

See: Glycogen Storage

Diseases; Muscular Dystrophy

MUSCLE PHOSPHORYLASE

DEFICIENCY

See: Glycogen Storage

Diseases; Muscular Dystrophy

MUSCULAR ATROPHY,

PERONEAL

See: Charcot-Marie-Tooth

Disease

MUSCULAR DYSTROPHY

See also: Facio-Scapulo-Humeral

Muscular Dystrophy;

Ventilator Use

Duchenne Parent Project

4785 Emerald Way

Middletown, OH 45042

(800) 714-KIDS (5437)

(513) 424-0696

(513) 425-9907(fax)

patfurlong@aol.com

http://www.parentdmd.org

MUSCULAR DYSTROPHY,

DEJERINE-LANDOUZY

See also: Facio-Scapulo-Humeral

Muscular Dystrophy;

Ventilator Use

Muscular Dystrophy

Association

3300 E. Sunrise Dr.

Tucson, AZ 85718-3208

(800) 572-1717

(520) 529-2000

(520) 529-5300 (fax)

mda@mdausa.org

http://www.mdausa.org

1,2,4,5,7,6,9

Muscular Dystrophy Association

of Canada

2345 Yonge St., Ste. 901

Toronto, ON CAN M4P 2E5

(800) 567-2873 (Canada only)

(416) 488-2699 ext. 160

(416) 488-0107 (fax)

motter@mdac.ca

http://www.mdac.ca

1,2,3,4,5,6, 7,8; French

materials

Muscular Dystrophy

Family Foundation Inc.

2330 N. Meridian St.

Indianapolis, IN 46208-5730

(800) 544-1213

(317) 923-MDFF (6333)

(317) 923-6334 (fax)

mdff@mdff.org

http://www.mdff.org

1,2,3,4,7

Society for Muscular Dystrophy

Information International

PO Box 479

Bridgewater, NS CAN B4V 2X6

(902) 685-3961

(902) 685-3962 (fax)

smdi@aura.com.com

http://www.auracom.com/~smidi/index.html

1,2,4

MUSCULAR DYSTROPHY,

FACIO-SCAPULO-HUMERAL

See: Facio-Scapulo-Humeral

Muscular Dystrophy

MYASTHENIA GRAVIS

Myasthenia Gravis Foundation

of America, Inc

5841 Cedar Lake Road,

Suite 204

Minneapolis, MN 55416

(800) 541-5454

(952) 545-6073 (fax)

myastheniagravis@msn.com

http://www.myasthenia.org

1,2,4,5, 6, 7,8,9; Spanish

materials

MYASTHENIC SYNDROME OF

LAMBERT-EATON

See: Charcot-Marie-Tooth

Disease

MYELIN DISORDERS

See also: Leukodystrophy,

The Canadian Myelin Research

Initiative

c/o Julie and Wayne Simmons

4330 SpinningdaJe Ct.

Mississauga, ON CAN LSM 3J8

(905) 567-8843

(905) 567-9189 (fax)

myelin@interlog.com

2,6,7,9,9

The Myelin Messenger

7320 N. Stable Ln.

Prescott, AZ 86305

(520) 776-7556

1,3

The Myelin Project

2001 Pennsylvania Ave. NW

Ste. 225

Washington, DC 20006-1850

(202) 452-8994

(202) 785-9578 (fax)

myelin@erols.com

http://www.myelin.org/

1,2,9; Italian/French/German/

Danish/Spanish materials.

MYELODYSPLASIA

See: Anemia, Aplastic

MYELOMA

See also: Cancer; Leukemia

International Myeloma

Foundation

12650 Riverside Dr., Ste. 206

North Hollywood, CA 91607

(800) 452-2873

(818) 487-7455

(818) 487-7454 (fax)

theimf@myeloma.org

http://www.myeloma.org

1,2,3,4,6,7,8

MYELOMA, MULTIPLE

See: Myeloma

MYELOSYRINGOSIS

See: Syringomyelia

MYOADENYLATE DEAMINASE

DEFICIENCY

See: Muscular Dystrophy

MYOCLONUS

See: Epilepsy; Opsoclonus-Myoclonus

Syndrome

Myoclonus Families United

155 E. 35th Street

Brooklyn, NY11234

(718) 252-2133

Myoclonus Research Foundation

200 Old Palisade Road, Suite

17D

Fort Lee, NJ 07024

(201) 585-0770

http://www.myoclonus.com

MYODENYLATE DEAMINASE

DEFICIENCY

See: Muscular Dystrophy

MYOPATHIES, CONGENITAL

See: Myotubular Myopathy, X-Linked

MYOPATHY, CENTRONUCLEAR

See: Myotubular Myopathy, X-Linked;

Muscular Dystrophy

MYOPATHY, HYPERTHYROID

See: Muscular Dystrophy;

Thyroid Disorders

MYOPHOSPHORYLASE

DEFICIENCY

See: Glycogen Storage Diseases

MYOSITIS

See also: Autoimmune

Disorders

National Myositis Association

7720B El Camino Real, Ste. 367

Rancho La Costa, CA 92009

(800) 230-0441

(619) 436-2185

1,2,3,4,5,9

MYOSITIS OSSIFICANS

See: Fibrodysplasis Ossificans

Progressiva

MYOTONIA, CONGENITA

See: Muscular Dystrophy

MYOTUBULAR MYOPATHY,

X-LINKED

See also: Muscular Dystrophy

Myotubular Myopathy Resource

Group

2602 Quaker Dr.

Texas City, TX 77590

(409) 945-8569

gscoggin@aol.com

http://www.mtmrg.org

1,2,3,9

MYXEDEMA

See: Thyroid Disorders

N-ACETYL GLUTAMATE

SYNTHETASE (NAGS)

DEFICIENCY

See: Urea Cycle Disorders

NAEFELI-FRANCESCHETTI-JADASSOHN

DYSPLASIA

See: Ectodermal Dysplasias

NAEGELI-FRANCESCHETTI-JADASSOHN

SYNDROME

See: Incontinentia Pigmenti

NAGER MILLER SYNDROMES

See also: Craniofacial

Disorders; Hearing

Impairments; Limb Disorders

Foundation for Nager and

Miller Syndromes (FNMS)

1827 Grove St. #2

Glenview, IL 60025-2913

(800) 507-3667

(847) 724-6449 (fax)

fnms@interaccess.com

http://www.fnms.net

1,2,3,4,6,8

NASAL ENCEPHALOCELE

See: Craniofacial Disorders

NEMALINE MYOPATHY

See: Muscular Dystrophy

NEPHRITIS

See: Kidney Diseases,

Hereditary, Fetal Alcohol

Syndrome

NEUROFIBROMATOSIS

See also: Acoustic Neuroma;

Hearing Impairments; Visual

Impairments

National Neurofibromatosis

Foundation

95 Pine St., 16th Fl.

New York, NY 10005

(800) 323-7938

(212) 344-6633

(212) 747-0004 (fax)

nnff@nf.org

http://www.nf.org

Neurofibromatosis, Inc

8855 Annapolis, Ste. 110

Lanham, MD 20706-2924

(800) 942-6825

(301) 577-8984

(301) 577-0016 (fax)

nfinc1@aol.com

http://www.nfinc.org

1,2,4,5,7,8

NEUROLOGICAL DISORDERS

Association for Comprehensive

Neurotherapy Latitudes

PO Box 210848

Royal Palm Beach,

FL 33421-0848

(561) 798-0472,

(561) 798-9820 (fax)

acn@latitudes.org

http://www.latitudes.org

1,2

Children's Neurobiological

Solutions

1726 Franceschi Road

Santa Barbara, CA 93103

(866) 267.5580 or

(805) 965.8838

http://www.cnsfoundation.org

info@cnsfoundation.org

8

The Colleen Giblin Foundation

for Children's Neurological &

Cancer-Related Research

690 Kinderkamack Rd.

Oradell, NJ 07645

(201) 262-2463

(201) 262-6442 (fax)

cgf01@aol.com

http;//www.colleengiblinfound.org

3,8,9; Funds research in

neurological and cancer-related

conditions in children

including: cancers of the brain;

spinal disorders; neurometabolic

diseases; seizure

disorders; and complications

from AIDS and fetal exposure

to chemical substances.

NEUROMETABOLIC

DISORDERS

See: Metabolic Disorders

NEURONAL CEROID

LIPOFUSCINOSES

See: Batten Disease

NEUROPATHY, AUDITORY

See: Kernicterus

NEUROPATHY, HEREDITARY,

SENSORY MOTOR

See: Charcot-Marie-Tooth

Disease

NEUROPATHY, PERIPHERAL

See: Charcot-Marie-Tooth

Disease

NEUROTRANSMITTER

DISHES, PEDIATRIC

Pediatric Neurotransmitter

Disease Association

6 Nathan Dr.

Plainview, NY 11803

(516) 937-0049

PND@pndassoc.org

http://www.pndassoc.org

1,2,3,6,7,8,9

NEUTROPENIA

Neutropenia Support Assoc., Inc.

PO Box 243

905 Corydon Ave.

Winnipeg, MB CAN R3M 3S7

(800) 663-8876;

(204) 489-8454

stevensl@neutropenia.ca

http://www.neutropenia.ca

1,2,3,4,5,6, 7; Promotes

chapter development and

involvement with the

Neutropenia SCN International

Registry French materials

Neutropenia SCN

International Registry

Puget Sound Plaza

1325 4th Ave., Ste. 620

Seattle, WA 98101-2509

(800) 726-4463

(206) 543-9749

(206) 543-3668 (fax)

registry@u.washington.edu

http://www.depts.washington.

edu/registry

1,2

NEUTROPENIA-PANCREATIC

INSUFFICIENCY

See: Shwachman Syndrome

NEVI, GIANT CONGENITAL

See also: Craniofacial

Disorders; Ichthyosis; Klippel-Trenaunay

Syndrome; Sturge-Weber

Syndrome

Nevus Network

PO Box 1981

Woodbridge, VA 22195

(703) 492-0253,

(405) 377-3403

nevusnet@bigfoot.com

http://www.nevusnetwork.org

1,2,3,5,9; French/Spanish

materials

NEVILLE DISEASE

See: Niemann-Pick Disease

NEVO SYNDROME

See: Sotos Syndrome

NIEMANN-PICK DISEASE

See also: Ataxia; Metabolic

Disorders; Tay-Sachs Disease

National Niemann-Pick Disease

Foundation, Inc.

P.O Box 49; 415 Madison

Avenue

Fort Atkinson, WI 53538

(920) 563-0930

(877) CURE-NPC (287-3672)

(920) 563-0931 (fax)

webmaster@nnpdf.org

nnpdf@cident.com

http://www.nnpdf.org

1,2,3,4,6,7,8

Ara Parseghian Medical Research

Foundation

1760 E. River Rd., Ste. 115

Tucson, AZ 85718

(520) 577-5106

(520) 577-5212 (fax)

victory@parseghian.org

http://www.parseghian.org

1,2,3,6,7,8,

NONKETOTIC

HYPERGLYCINEMIA

See: Acidemia, Organic

NOONAN SYNDROME

See also: Growth Disorders;

Heart Disorders; Malignant

Hyperthermia; Williams

Syndrome

(TNSSG) Noonan Syndrome

Support Group, Inc.

PO Box 145

Upperco, MD 21155

(888) 686-2224

(410) 374-5245

wandar@bellatlantic.net

http://www.noonansyndrome.org

1,2,3,6

NORMAN-ROBERTS

SYNDROME

See: Lissencephaly

NORRIE DISEASE

See also: Hearing Impairments;

Visual Impairments

Norrie Disease Foundation

Developmental Neurogenetics Unit

Mass General Hospital

CNY #6217

149 13 St.

Charlestown, MA 02129

(617) 726-5718

(617) 724-9620 (fax)

sims@helix.mgh.harvard.edu

http://www.neuro.mgh.harvard.edu

2,3,4

NUTRITION

The Oley Foundation

214 Hun Memorial A-28

Albany Medical Center

Albany, NY 12208

(800) 776-OLEY (6539)

(518) 262-5079

(518) 262-5528

bishopj@mail.amc.edu

http://www.oley.org

1,2,3,6,7,

NYHAN SYNDROME

See: Lesch-Nyhan Syndrome

OAV SYNDROME

See: Goldenhar Syndrome

OBSESSIVE COMPULSIVE

DISORDER

OC Foundation

337 Notch Hill Rd.

North Branford, CT 06471

(203) 315-2190

(203) 315-2196 (fax)

info@ocfoundation.org

http://www.ocfoundation.org

1,2,3,4,5,6,7,8

OBSTRUCTIVE

HYDROCEPHALUS

See: Dandy-Walker Syndrome

OCULO-AURICULO-VERTEBRAL

SPECTUM

See: Goldenhar Syndrome

OCULOCEREBRORENAL

SYNDROME

See: Lowe Syndrome

OCULODENTODIGITAL

SYNDROME; TYPE I & II

See: Ectodermal Dysplasias

OCULOOSTEOCUTANEOUS

SYNDROME

See: Ectodermal Dysplasias

ODONTOONYCHODEIMRAL

DYSPLASIA

See: Ectodermal Dysplasias

ODONTOONYCHOHYPOHIDRO

TIC DYSPLASIA

See: Ectodermal Dysplasias

ODONTOTRICHODYSPLASIA

WITH NEUTROPENIA

See: Ectodermal Dysplasias;

Neutropenia

ODONTOTRICHOMELIC

SYNDROME

See: Ectodermal Dysplasias

OLDFIELD SYNDROME

See: Colon Cancer, Hereditary;

Polyposis

OLIGOPHRENIA-MICROPHTHALMOS

See: Norrie Disease

OLIGOSACCHARIDOSES

See: Tay-Sachs Disease

OLLIER DISEASE

See also: Growth Disorders

Ollier's/Maffuci Self-Help Group

c/o Bonnie Schmid-Hatch,

founder

1824 Millwood Rd.

Sumter, SC 29150

(803) 775-1757

(803) 934-0347 (fax)

olliers@aol.com

http://www.ollier-maffucci.org

1,3,4,9

ONDINE'S CURSE

See: Central Hypoventilation

Syndrome, Congenital

OPITZ FG SYNDROME

See: FG Syndrome

OPITZ HYPERTELORISM-HYPOSPADIUS

SYNDROME

See: Opitz Syndrome

OPITZ

OCULOGENITOLARYNGEAL

SYNDROME

See: Opitz Syndrome

OPITZ SYNDROME

Opitz G/BBB Family Network

PO Box 516

Grand Lake, CO 80447

(970) 627-8935 (phone/fax)

(970)627-8818 fax

opitznet@mac.com

http://www.gle.egsd.k12.co.us/opitz/index.htm

1,2,3,4,5,6,7,8,9

OPITZ-BBBG COMPOUND

SYNDROME

See: Opitz Syndrome

OPTIZ-FRIAS SYNDROME

See: Opitz Syndrome

OPSOCLONUS-MYOCLONUS

SYNDROME

See also: Myoclonus

Opsoclonus-Myoclonus Support

Network

c/o Connie Quinn

725 North St.

Jim Thorpe, PA 18229

(717) 325-3302

clquinn@ptd.net

http://www.geocities:com/hotsprings/spa/2190

3

OPTIC NERVE HYPOPLASIA

See: Septo-Optic Dysplasia

ORBITAL HYPERTELORISM

See: Craniofacial Disorders

ORGANIC ACIDEMIA

See: Acidemia, Organic

ORNITHINE

TRANSCARBAMYLASE (OTC)

DEFICIENCY

See: Urea Cycle Disorders

OROFACIODIGITAL

SYNDROME, TYPE I

See: Ectodermal Dysplasias

OSLER-WEBER-RENDU

SYNDROME

See: Hemorrhagic

Telangiectasis, Hereditary

OSTEITIS FIBROSA

DISSEMINATA

See: McCune-Albright

Syndrome

OSTEOCHONDROMATOSIS

See: Exostoses, Multiple

Hereditary

OSTEOGENESIS IMPERFECTA

See also: Growth Disorders

Osteogenesis Imperfecta

Foundation

804 W. Diamond Ave., Ste. 210

Gaithersburg, MD 20878

(800) 981-2663

(301) 947-0083

(301) 947-0456 (fax)

bonelink@oif.org

http://www.oif.org

1,2,3,4,5,6, 7; Support groups;

Spanish materials

OSTOMY

United Ostomy Association, Inc.

19722 MacArthur Blvd.,

Ste. 200

Irvine, CA 92612

(800) 826-0826

(949) 660-8624

(949) 660-9262 (fax)

uoa@deltanet.com

http://www.uoa.org

1,2,4,6,6,7; National

Conference in Reno, Nevada

in July

United Ostomy Association of

Canada, Inc

PO Box 46057

College Park PO

444 Yonge St.

Toronto, ON CAN M5B 2L8

(416) 595-5452

(416) 595-9924 (fax)

uoacan@astral.magic.ca

http://www3.ns.sympatico.ca/canada/ostomy

1,2,3,4,5,6, 7,8,9; youth

network

OXALOSIS & HYPEROXALURIA

See also: Kidney Disorders

Oxalosis & Hyperoxaluria

Foundation

12 Pleasant St..

Maynard, MA 01754

(888)721-2432 PIN#5392

(978)461-0614

ohf@ohf.ultranet.com

http://www.ohf.org

1,2,8

OXOPROLINURIA

See: Acidemia, Organic

PACHYGYRIA

See: Lissencephaly

PACHYONYCHIA, CONGENITAL

See: Ectodermal Oysplasias

PAGON SYNDROME

See: Hydrocephalus;

Lissencephaly

PALLISTER-HALL SYNDROME

See also: Anorectal

Malformations; Pituitary

Tumors

Pallister-Hall Foundation

Debra Messer

RFD Box 3000, Fairground Rd

Bradford, VT 05033

(802) 222-9683

messer@sover.net

http://www.kumc.edu/gec/support/palshall.html

2,3,4,9

PALLISTER-KILLIAN

SYNDROME

See also: Epilepsy

Pallister-Killian Family Support

Network

3700 Wyndale Ct.

Ft Worth, TX 76109

(817) 927-8854

(817) 927-2073 (fax)

3

PALMOPLANTAR

HYPERKERATOSIS AND

ALOPECIA

See: Ectodermal Dysplasias

PANCREATIC INSUFFICIENCY

WITH NEUTROPENIA

See: Shwachman Syndrome

PANCYTOPENIA, CONGENITAL

See: Anemia, Fanconi

PANHYPOPITUITARISM

See: Growth Disorders

PANMYELOPATHY

See: Anemia, Aplastic

PANMYELOPHTHISIS

See: Anemia, Aplastic

PAPILLOMAS

See: Respiratory

Papillomatosis, Recurrent

PAPILLON-LEFEVRE

SYNDROME

See: Ectodermal Dysplasias

PARALYSIS, PERIODIC

See: Muscular Dystrophy

PARALYTIC POLLO

See: Polio

PARAMYOTONIA CONGENITA

See: Muscular Dystrophy

PARKES-WEBER SYNDROME

See: Klippel-Trenaunay

Syndrome

PARRY-ROMBERG SYNDROME

See: Craniofacial Disorders

PATIN SYNDROME

See: Fibrodysplasis Ossificans

Progressiva

PDD

See: Autism

PELIZAEUS-MERZBACHER

DISEASE

See also: Leukodystrophy

The PMD Foundation

8100 Lincoln Dr. W., Suite D

Marlton, NJ 08053

(856) 396-0560

(856) 396-0451 (Fax)

mlaprocido@pmdfoundation.

Dry

http://www.pmdfoundation.org

PEMPHIGUS, FAMILIAL

See: Ichthyosis

PEPCK DEFICIENCY

See: Lactic Acidosis;

Mitochondrial Disorders

PERIPHERAL NEUROPATHY

See: Charcot-Marie-Tooth

Disease

PERONEAL MUSCULAR

ATROPHY

See: Charcot-Marie-Tooth

Disease

PERVASIVE DEVELOPMENTAL

DISORDER (PDD)

See: Autism

PEUTZ-TOURAINE SYNDROME

See: Colon Cancer, Hereditary/

Polyposis

PFEIFFER SYNDROME

See: Craniofacial Disorders

PHAKOMATOSIS

See: Tuberous Sclerosis

PHENYLKETONURIA (PKU)

See also: Metabolic Disorders

Children's PKU Network

1520 State St., Ste. 111

San Diego, CA 92101

(619) 233-3202

(619) 233-0838 (fax)

pkunetwork@aol.com

2,4,7; Spanish materials

National Coalition

for PKU & Allied Disorders

P. O. Box 1244

Mansfield, MA 02048

(877)996-2723

http://www.pkuallieddisorders.org

National PKU News

c/o Virginia Schuett

6869 Woodlawn Ave. NE,

Ste. 116

Seattle, WA 98115-5469

(206) 525-8140

(206) 525-5023 (fax)

schuett@pkunews.org

http://www.pkunews.org

1,3

PHOSPHOENOLPYRUVATE

CARBOXYKINASE DEFICIENCY

See: Lactic Acidosis;

Mitochondrial Disorders

PHOSPHOFRUCTO

KINASE DEFICIENCY

See: Glycogen Storage

Diseases; Muscular Dystrophy

PHOSPHOGLYCERATE

KINASE DEFICIENCY

See: Muscular Dystrophy

PHOSPHOGLYCERATE

MUTASE DEFICIENCY

See: Muscular Dystrophy

PHOSPHORYLASE B

KINASE DEFICIENCY

See: Glycogen Storage

Diseases; Muscular Dystrophy

PHOSPHORYLASE DEFICIENCY

See: Glycogen Storage

Diseases; Muscular Dystrophy

PIERRE ROBIN SYNDROME

See: Craniofacial Disorders;

Growth Disorders

PIGMENT DISORDERS

See: Albinism &

Hypopigmentation; Vitiligo

PILI TORTI AND ENAMEL

HYPOPLASIA

See: Ectodermal Dysplasias

PILI TORTI AND

ONYCHODYSPLASIA

See: Ectodermal Dysplasias

PITUITARY

DISORDERS/TUMORS

Pituitary Network Association

P.O Box 1958

Thousand Oaks,CA 91358

(805) 496-4932

(805) 557-1161 (fax)

pna@pituitary.org

http://www.pituitary.org

1,2,3,4,7,8

PITYRIASIS RUBRA PILARIS

See: Ichthyosis

POLIO

Informed Parents Against VAPP

(Vaccine Associated

Paralytic Polio)

PO Box 53212

Washington, DC 20009

(888) 363-8277

(703) 319-8277 (fax)

NOVAPP@aol.com

http://www.ipav.rg

2,3,7,8,9

International Polio Network

4207 Lindell Blvd., #110

Saint Louis, MO 63108-2915

(314) 534-0475

(314) 534-5070 (fax)

gini_intl@msn.com

http://www.post-polio.org

1,2,4,6,8; Local support

groups.

POLYCYSTIC KIDNEY DISEASE

See: Kidney Disorders

POLYENDOCRINE

ADENOMATOSIS

See: Multiple Endocrine

Neoplasia I

POLYMYOSITIS

See: Muscular Dystrophy;

Myositis

POLYNEURITIS, ACUTE

IDIOPATHIC

See: Guillain-Barre Syndrome

POLYNEUROPATHY, CHRONIC

RELAPSING

See: Guillain-Barre Syndrome

POLYOSTOTIC FIBROUS

DYSPLASlA

See: McCune-Albright

Syndrome

POLYPOSIS

See also: Cancer; Colon

Cancer, Hereditary

Familial Gastrointestinal

Cancer Registry

Mount Sinai Hospital

1157-660 University Ave.

Toronto, ON CAN M5G 1X5

(416) 586-8334

(416) 586-8644(fax)

tberk@mtsinai.on.ca

1,2,3,4,9; French materials

POLYRADICULONEUROPATHY

See: Guillain-Barre Syndrome

POMPE DISEASE

See also: Glycogen Storage

Diseases; Muscular Dystrophy

The Children's Pompe Foundation

66 Witherspoon St, Ste 341

Princeton, NJ 08542

(609) 924-7192

(609) 767-2154 (fax)

http://www.pompe.org

info@pompe.org

2,3,4,7,8

PORPHYRIA

Metabolic Disorders American

Porphyria Foundation

PO Box 22712

Houston, TX 77227

(713) 266-9617

(713) 871-1788 (fax)

porphyrus@juno.com

http://www.enterprise.net/apf

1,2,3,4,8

Metabolic Disorders Canadian

Porphyria Foundation Inc.

Box 1206

Neepawa, MB CAN ROJ 1HO

(204) 476-2800 (voice/fax)

porphyria@cpf-inc.ca

http://www.cpf-inc.ca

1,2;7,9; French materials

PORT WINE STAINS

See: Sturge-Weber Syndrome

POSTAXIAL ACROFACIAL

DYSOSTOSIS

See: Nager & Miller

Syndromes

PRADER-WILLI SYNDROME

Ontario Prader-Willi Syndrome

Association

1920 Yonge St. C104

Toronto, ON CAN M4S 3B2

(800) 563-1123

(416) 481-8657 (voice/fax)

prader-willi@sympatico.ca

http://www3.sympatico.ca/prader-willi/

1,2,3,4,5,8,9; French materials

Prader-Willi Foundation

223 Main St.

Port Washington, NY 11050

(800) 253-7993

(516) 944-3173 (fax)

foundation@praderwilli.inter.net

http://prader_willi.inter.net

2,3,4,7,8

The Prader-Willi Syndrome

Association (USA)

5700 Midnight Pass Rd., Ste. 6

Sarasota, FL 34242

(800) 926-4797

(941) 312-0400

(941) 312-0142 (fax)

pwsausa@aol.com

http://www.pwsausa.org

1,2,3,4,6,6, 7,8,9; English,

Spanish and French materials

PROGERIA

International Progeria Registry

c/o W. Ted Brown, MD, PhD

NY State Inst. for Basic Research

in Developmental Disabilities

1050 Forest Hill Rd.

Staten Island, NY 10314

(718) 494-5333

(718) 494-4835(fax)

wtbibr@aol.com

3,9

The Progeria Research

Foundation, Inc.

PO Box 3453

Peabody, MA 01961

(978) 535-2594

(978) 535-5849 (fax)

progeria@netzero.com

http://www.progeriaresearchorg

1,2,8,9

PROGRESSIVE

HYPOERYTHEMIA

See: Anemia, Aplastic

PROGRESSIVE OSSEOUS

HETEROPLASlA

See: Connective Tissue

Disorders; Fibrodysplasis

Ossificans Progressiva

PROPINONYL-COA

CARBOXYLASE (PCC)

See: Acidemia, Organic

PROPIONIC ACIDEMIA

See: Acidemia, Organic

PROTEUS SYNDROME

See: Neurofibromatosis

PROTOCOPROPORPHYRIA

See: Liver Disorders; Porphyria

PROTOPORPHYRIA

See: Liver Disorders; Porphyria

PRUNE BELLY SYNDROME

Prune Belly Syndrome Network

100 UCLA Medical Plaza

Ste. 690

Los Angeles, CA 90095

(310) 825-6865

(310) 794-9962 (fax)

http://www.pedsuro.com

3,4

PSEUDO-HURLER

POLYDYSTROPHY

See: Mucopolysaccharidosis

Tay-Sachs Disease

PSEUDOCHOLINESTERASE

DEFIOENCY

See: Malignant Hyperthermia

PSEUDOXANTHOMA

ELASTICUM (PXE)

See also: Connective Tissue

Disorders; Heart Disorders;

Macular Diseases; Visual

Impairments

National Association for

Pseudoxanthoma Elasticum

3500 E. 12th Ave.

Denver, CO 80218-1910

(303) 355-3866

(303) 355-3859 (fax)

(at Texas Tech.)

derckd@ttuhsc.edu

(at Denver hdqtrs.)

pxenape@estreet.com

http://www.napxe.org

1,5,6; newsletter provided on

tape; low-vision clinic

PSORIASIS

National Psoriasis Foundation

6600 SW 92nd Ave., Ste.300

Portland, OR 97222

(503) 244-7404

(800) 723-9166

(503) 245-0626 (fax)

getinfo@N PFU SA.org

http://www.psoriasis.org

1,2,3,4,6, 7,8,9; Spanish

materials

PTOSIS

See: Blepharophimosis, Ptosis,

Epicanthus Inversus Syndrome

(BPES)

PULMONARY VALVULAR

STENOSIS

See: Heart Disorders

PURINE METABOLIC

DISORDERS

Purine Research Society

5424 Beech Ave.

Bethesda, MD 20814-1730

(301) 530-0354

(301)564-9597 (fax)

purine@erols.com

http://www2.dgsys.com/~purine/

2,4,8

PURPURA HEMORRHAGICA

See: Purpura, Idiopathic

Thrombocytopenia (ITP)

PURPURA, IDIOPATHIC

THROMBOCYTOPENIA (ITP)

ITP Society

Children's Blood Foundation

333 E. 38th St. Rm. 830

New York, NY 10016-2745

(800) 487-7010 ( ITP Hotline)

(212)297-4336 (office)

(212) 297-4340 (fax)

cbf@nyp.org

http://www.ultranet.com

/~itpsoc

2

PYRIMIDINE METABOLIC

DISORDERS

See: Purine Metabolic

Disorders

PYROGLUTAMICACIDURIA

See: Acidemia, Organic

PYRROLORPHYRIA

See: Porphyria

PYRUVATE CARBOXYLASE

DEFICIENCY

See: Acidemia, Organic; Lactic

Acidosis

PYRUVATE DEHYDROGENASE

DEFICIENCY

See: Acidemia, Organic; Lactic

Acidosis

PYRUVATE DEHYDROGENASE

PHOSPHATASE

See: Lactic Acidosis;

Q.T PROLONGATION

See: Long Q-T Syndrome

RAPP-HODGKINS SYNDROME

See also: Cleft Palate;

Craniofacial Disorders; DeafBlind;

Ectodermal Dysplasias;

Hearing Impairments; Visual

Impairments

RASMUSSEN ENCEPNAUTIS

See: Rasmussen Syndrome

RASMUSSEN SYNDROME

See also: Epilepsy; Seizure

Disorders

Rasmussen Syndrome and

Hemispherectomy Support

Network

c/o Al and Lynn Miller

8235 Lethbridge Rd

Millersville, MD 21108

(410) 987-5221 (voice)

rssnlynn@aol.com

http://medhlp.netusa.net/

http://www/rasm.htm

http://www.familyvillage.wisc.edu/lib-rs.htm

1,2,3,6; Spanish/French/

Russian/Greek materials

RECKLINGHAUSEN DISEASE

See: Neurofibromatosis

REFLEX SYMPATHETIC

DYSTROPHY SYNDROME

Reflex Sympathetic Dystrophy

Syndrome Association of America

116 Haddon Ave, Ste. D

Haddonfield, NJ 08033

(856) 795-8845 (voice/fax)

jwbroatch@aol.com

http://www.rsds.org

1,2,3,4,6,7,8

REFRACTORY ANEMIA

See: Anemia, Aplastic

REFSUM DISEASE

See: Ichthyosis;

Leukodystrophy; Tay-Sachs

Disease

RENAL DISORDERS

See: Kidney Disorders

RENDU-OSLER-WEBER

SYNDROME

See: Hemorrhagic

Telangiectasis, Hereditary

RESPIRATORY

PAPILLOMATOSIS, RECURRENT

Recurrent Respirator

Papillomatosis Foundation

PO Box 6643

Lawrencevilfe, NJ 08648-0643

(609) 530-1443

(609) 530-1912 (fax)

rrpf@rrpf.org

www.rrpf.org

1,2,3,4,7,8,9

RETINITIS PIGMENTOSA

See also: Macular Diseases;

Usher Syndrome; Visual

Impairments

Retinitis Pigmentosa International

PO Box 900

Woodland Hills, CA 91364

(800) 344-4877

(818) 992-0500

(818) 992-3265 (fax)

RPINT@pacbell.net

http://www.rpintemational.org

1,2,4,7,6,9; Spanish materials

RP Research Foundation Fighting

Blindness

c/o Sharon Cole or Margot

Alward

60 St Claire Ave East St 703

Toronto, ON CAN M4T-1N5

(800) 461-3331 (Canada only)

(416) 360-4200

(416) 360-0060 (fax)

1,2,3,6,7,6; French materials

The Foundation Fighting

Blindness

Mitsy Palmer, Constituent

Services Coordinator &

Edy Asbell, Constituent Services

Representative

11435 Cronhill Drive

Owings Mill, MD 211117-2220

(888) 394-3937

(800) 683-5551 (Toll Free TDD)

(410) 568-0150

(410) 363-7139 (local TDD)

(410) 363-2393 (fax)

info@blindness.org

http://www.blindness.org

1,2,3,4,5,6,8,9; young adult

program, retina donor program

RETINOBLASTOMA

See: Cancer/Visual

Impairments

National Retinoblastoma

Parent Group

PO Box 317

Watertown, MA 02471

(800) 562-6265

(617) 972-7444 (fax)

1,2,3,4,5,7

RETINOCEREBRAL

ANGIOMATOSIS

See: Von Hippel-Lindau

Syndrome

RETT SYNDROME

International Rett Syndrome

Association

9121 Piscataway Rd., Ste. 26

Clinton, MD 20735

(800) 818-7388

(301) 856-3334

(301) 856-3336 (fax)

rettsynd romeontado@home.com

http://members.home.net/rettsyndromeontario

1,2,3,4,5,6,8;

Spanish/French/Russian/Germ

an materials

Ontario Rett Syndrome

Association

147 Westdale Rd.

Oakville, ON CAN L6L 427

(905) 844-7673

(905) 884-8730 (fax)

rettsyndromeontario@home.com

http://members.home.net/rettsyndromeontario

1,2,3,4,5,6,8

Rett Syndrome Research

Foundation

4600 Devitt Dr,

Cincinnati, OH 45246

(513) 874-3020

(513) 874-2520 (fax)

http://www.rsrf.org

1,8,9

REYE SYNDROME

See: Fatty Oxidation Disorder

RILEY-DAY SYNDROME

See: Familial Dysautonomia

RING CHROMOSOME 15

See: Chromosome Deletions;

Craniofacial Disorders;

Epilepsy; Heart Disorders;

Kidney Disorders; Limb

Disorders; Scoliosis

RING CHROMOSOME 18

See: Chromosome 13 & 18

Disorders; Chromosome 18

Disorders; Chromosome

Deletions; Craniofacial

Disorders; Deaf-Blind; Hearing

Impairments; Visual

Impairments

RING CHROMOSOME 21

See: Chromosome Deletions

RING CHROMOSOME 22

See: Chromosome Deletions

RING CHROMOSOME 4

See: Chromosome Deletions;

Wolf-Hirschhorn Syndrome

RING CHROMOSOME 9

See: Chromosome Deletions;

Craniofacial Disorders

ROBINOW SYNDROME

See also: Craniofacial

Disorders; Short Stature

Robinow Syndrome Foundation

c/o Karla M. Kruger

PO Box 1072

Anoka, MN 55303

(763) 434-1152

(763) 434-3691 (fax)

kmkruger@qwest.net

http://www.Robinow.org

1,3,6

ROBINSON SYNDROME

See: Ectodermal Dysplasias

ROMANO-WARD SYNDROME

See: Long Q-T Syndrome

ROSAI-DORFMAN DISEASE

See: Histiocytosis

ROSSELI-GULIENETTI

SYNDROME

See: Ectodermal Dysplasias

ROTHMUND-THOMPSON'S

SYNDROME

See: Ectodermal Dysplasias

RSH SYNDROME

See: Smith-Lemli-Opitz

Syndrome

RUBINSTEIN SYNDROME

See: Rubinstein-Taybi

Syndrome

RUBINSTEIN-TAYBI SYNDROME

See also: Craniofacial

Disorders; Heart Disorders

Rubinstein-Taybi Parent Group

c/o Lorrie Baxter

PO Box 146

Smith Center, KS 66967

(888) 447-2989

(785) 697-2989

(785) 697-2985 (fax)

lbaxter@ruraltel.net

http://www.rubinstein-taybi.org

1,2,3,9

RUSSELL SYNDROME

See: Russell-Silver Syndrome

RUSSELL-SILVER SYNDROME

See also: Growth Disorders;

Short Stature

The Magic Foundation Russell-Silver

Support Group

1327 N. Harlem Ave.

Oak Park, IL 60302

(800) 3- Magic -3

(708) 383-0808

(708) 383-0899 (fax)

mary@magicfoundation.org

http://www.magicfoundation.org

2,3,4,5,6

SAETHRE-CHOTZEN

SYNDROME

See: Craniofacial Disorders

SALAMON SYNDROME

See: Ectodermal Dysplasias

SANDHOFF DISEASE

See: Tay-Sachs Disease

SANFILIPPO SYNDROME

See: Mucopolysaccharidosis;

Tay-Sachs Disease

SCHEIE SYNDROME

See: Mucopolysaccharidosis;

Tay-Sachs Disease

SCHINZEL-GIEDION SYNDROME

See: Apnea, Sleep; Deaf-Blind;

Ectodermal Dysplasias;

Epilepsy; Growth Disorders;

Hearing Impairments; Visual

Impairment

SCID

See: Immune Disorders

SCLERODERMA

See also: Arthritis;

Autoimmune Disorders

Scleroderma Federation

89 Newbury St., Ste. 201

Danvers, MA 01923

(800) 722-HOPE

(978) 750-4499

(978) 750-9902 (fax)

sfinfo@scleroderma.org

http://www.scleroderma.org

1,2,3,4,5,6,7,8,9

Scleroderma Research Foundation

PO Box 200

Columbus, NJ 08022

(800) 637-4005

(609) 723-7400

1,2,4

Scleroderma Foundation, Inc.

89 Newbury St.

Danvors, MA 01923

(800) 722-HOPE (4673)

(978) 750-4499

(978) 750-9902 (fax)

sfinfo@scleroderma.org

http://www.scleroderma.org

1,2,4,5,6,7,8,9

SCOLIOSIS

National Scoliosis Foundation

5 Cabot Pl.

Stoughton, MA 02072

(800) NSF-MYBACK (673-6922)

(781) 341-6333

(781) 341-8333 (fax)

nsf@scoliosis.org

http://www.scoliosis.org

1,2,3,4,5,6,7

SECKEL SYNDROME

See: Craniofacial Disorders;

Growth Disorders

SEIZURE DISORDERS

See also: Epilepsy

THRESHOLD--Intractable Seizure

Disorder Support Group &

Newsletter

Epilepsy Foundation of New

Jersey

Lion Head Office Park., Ste. 8A

35 Beaverson Blvd.

Brick, NJ 08733

(800) FSC-NJ10 (372-6510)

(732) 262-8020

(732) 262-4373 (fax)

fsnj@aol.com

http://www.efnj.com

1

SENSORY AND AUTONOMIC

NEUROPATHY, HEREDITARY

See: Familial Dysautonomia

SENSORY MOTOR

NEUROPATHY, HEREDITARY

See: Charcot-Marie-Tooth

Disease

SENSORY NEUROPATHY WITH

ANHIDROSlS, CONGENITAL

See: Familial Dysautonomia

SEPTO-OPTIC DYSPLASlA

See also: Pituitary Tumors;

Visual Impairments

FOCUS: For Our Children's

Unique Sight

4460 Fogg Ct.

San Diego, CA 92109

(858) 273-1473 (voice/fax)

support@focusfamilies.org

http://www.focusfamilies.org

1,2,3,9

SERUM PROTEASE INHIBITOR

DEFICIENCY

See: Alpha-1-Antitrypsin (AAT)

Deficiency

SEVERE COMBINED

IMMUNOOEFICIENCY (SCID)

See: Immune Disorders

SEX CHROMOSOME

DISORDERS, FEMALE

See: Turner Syndrome

SEX CHROMOSOME

DISORDERS, MALE

See: Klinefelter Syndrome

SHORT STATURE

See also: Dwarfism/Growth

Disorders

Little People of America

PO Box 745

Lubbock, TX 79408

(806) 797-8830 (voice/fax; call

first) Engl./Span.

(888)572-2001 (voice/fax;

call first)

lpadatabase@juno.com

http://www.lpaonline.org

1,2,3,5,8; Spanish materials

SHPRINTZEN SYNDROME

See: Velo-Cardio-Facial

Syndrome

SHWACHMAN SYNDROME

See also: Growth Disorders

Shwachman Diamond

Syndrome, Intl.

c/o Nancy Ruick

5195 Hampsted Village Center

Way, PMB # 162

New Albany OH, 43054-8331

1-877-SDS INTL(737-4685)

(614) 939-0752 (FAX)

4SSkids@shwachmandiamond.org

http://www.shwachman~diamond.org

1,2,3,4,6,8; French/Italian/

Dutch materials

SHWACHMAN-DIAMOND

SYNDROME

See: Shwachman Syndrome

SHY-DRAGER/MULTIPLE

SYSTEM ATROPHIES

See also: Dysautonomia

Shy-Drager Syndrome MSA

Support Group

2004 Howard Ln.

Austin, TX 78728

(866) 737-4999

(512) 251-3315 (fax)

http://www.shy-drager.com

SIALIDOSIS

See: Mucopolysaccharidosis;

Tay-Sachs Disease

SIALOLIPIDOSIS

See: Mucolipidosis Type IV

SICKLE CELL ANEMIA

See: Sickle Cell Disease

SICKLE CELL DISEASE

Sickle Cell Disease Association

of America

200 Corporate Pointe, Ste. 495

Cutver City, CA 90203-8727

(800) 421-8453

(310) 216-6363

(310) 215-3722 (fax)

1,2,3,4,5,6,8,9

Sickle Cell Disease Association of

the Piedmont

PO Box 20964

Greensboro, NC 27420

(800) 733-8297

(336) 274-1507

(336) 275-7984 (fax)

scdap@aol.com

http://www.greensboro.com

/sickle/

1,2,3,4,5,6,7

SIDS

See: Sudden Infant Death

Syndrome (SIDS)

SILVER SYNDROME

See: Russell-Silver Syndrome

SILVER-RUSSELL SYNDROME

See: Russell-Silver Syndrome

SIMPSON-GOLABI-BEHMEL

SYNDROME

See: Beckwith-Wiedermann

Syndrome

SKELETAL ANOMALIES

See: Ectodermal Dysplasias

SKELETAL DYSPLASlA

See: Dwarfism; Growth

Disorders; Short Stature

SLEEP APNEA

See: Apnea, Sleep

SLO SYNDROME

See: Smith-Lemli-Opitz

Syndrome

SLY SYNDROME

See: Mucopolysaccharidosis;

Tay-Sachs Disease

SMITH-LEMLI-OPITZ

SYNDROME

See: Craniofacial Disorders

Smith-Lemli-Opitz (RSH)

Advocacy & Exchange

2650 Valley Forge Drive

Boothwyn PA 19061

(610) 485-9663

(419) 781-3317 (fax)

bhook@erols.com

http://www.members.aol.com/slo97/index.html

1,2,3,6,9

SMITH-MAGENIS SYNDROME

PRISMS: Parents & Researchers

Interested in Smith-Magenis

Syndrome

76 So. New Boston Road

Francestown, NH 03043-3511

(603) 547-8384

(603) 547-3043 (fax)

info@smithmagenis.org

http://www.smithmagenis.org

1,2,3,4,5

SOTOS SYNDROME

See also: Growth Disorders

Sotos Syndrome USA Support

Association

PMB #235

3 Danada Sq E.

Wheaton, IL 60187

(888) 246-SSSA

(630) 682-8815 (international)

sssa@wetl.com

http://www.well.com/user/sssa

1,2,3,4,6

SOUQUES-CHARCOT

SYNDROME

See: Progeria

SOUTH AFRICAN GENETIC

PORPHYRIA

See: Liver Disorders; Porphyria

SPASMODIC OYSPHONIA

See: Dystonia

SPASMODIC TORTICOLLIS

See: Dystonia

SPASMODIC WRYNECK

See: Dystonia

SPASTIC PARAPLEGIA,

FAMILIAR

See: Ataxia

SPEECH DISORDERS

See: Apraxia; Stuttering

SPHINGOMYELIN LIPIDOSIS

See: Niemann-Pick Disease

SPIELMEYER-VOGT DISEASE

See: Batten Disease

SPIELMETER-VOGT-BATTEN

SYNDROME

See: Batten Disease

SPINA BIFIDA

See also: Arnold-Chiari

Malformation; Hydrocephalus;

Incontinence; Latex Allergy

Spina Bifida Association

ot America

4590 MacArthur Blvd. NW,

Ste. 250

Washington, DC 20007-4226

(800) 621-3141

(202) 944-3285

(202) 944-3295 (fax)

sbaa@sbaa.org

http://www.sbaa.org

1,2,4,5,6,8; Spanish materials,

scholarship program

Spina Bifida and Hydrocephalus

Association of Canada

#167, 167 Lombard Ave,.

Winnipeg, MB CAN R3B 0T6

(800) 565-9488 (Canada only)

(204) 925-3650

(204) 925-3654 (fax)

spinab@mts.net

http://www.sbhac.ca

1,2,4,5,8,7,8; French materials

SPINAL CORD INJURIES

See also: Ventilator Use

Christopher Reeve Paralysis

Foundation

500 Morris Ave.

Springfield, NJ 07081

(800) 225-0292

(973) 379-2690

(973) 912-9433 (fax)

info@crpf.org

http://www.paralysis.org

1,8

National Spinal Cord Injury

Association

8701 Georgia Ave., Ste. 500

Silver Spring, MD 20910-3723

(800) 962-9629 (hottine only)

(301) 588-6959

(301) 588-9414 (fax)

info@spinalcord org

resource@spinalcord.org

http://www.spinalcord.org

1,2,4,5,6,7,8; Spanish

materials

National Spinal Cord Injury

Hotline

2200 Kernon Dr.

Baltimore, MD 21207

(800) 526-3456

(410) 448-6623 (local)

(410) 488-6627 (fax)

scihotline@aol.com

http://www.scihotlne.org

2,3,4,5

SPINAL MUSCULAR ATROPHY

Families of SMA

PO Box 196

Libertyville, IL 60048-0196

(800) 886-1762

(847) 367-7620

(847) 367-7623 (fax)

info@fsma.org

http://www.fsma.org

1,2,3,4,5,6, 7,8,9; Spanish

materials

SPINOCEREBELLAR ATAXIA

See: Ataxia; Friedreich Ataxia

SPLENIC ANEMIA, FAMILIAL

See: Gaucher Disease

SPONDYLOEPIPHYSEAL

DYSPLASIA CONGENITA

See: Cleft Palate; Growth

Disorders; Visual Impairments

SPONDYLOEPIPHYSEAL

DYSPLASIA TARDA

See: Growth Disorders

SSPE

See: Subacute Sclerosing

Panencephalitis

STAR PROTEIN DEFICIENCY

See: Adrenal Disorders

STARGARDT DISEASE

See: Macular Diseases/

Retinitis Pigmentosa; Visual

Impairments

STEELY HAIR DISEASE

Menkes Disease

STENGEL SYNDROME

See: Batten Disease

STENGEL-BATTEN-MAYOU-SPIELMEYER-VOGT

DISEASE

See: Batten Disease

STICKLER SYNDROME

Stickler Involved People (SIP)

15 Angelina Dr.

Augusta, KS 67010

(316) 775-2993

http://www.stickler.org

sip@sticklers.org

1,2,3,6

STROKE

See also: Aphasia, Acquired;

Heart Disorders

National Stroke Association

9707 E. Easter Ln.

Englewood, CO 80112-5112

(800) 787-6537

(303) 649-9299

(303) 649-1328(fax)

info@stroke.org

http://www.stroke.org

1,2,5,6,7,8; Spanish/French

materials

Heart and Stroke Foundation

of Canada

222 Queen St. Ste 1402

Ottawa, ON CAN K1P 5V9

(613) 569-4361

1-888-HSF-INFO (1-833-473-4636)

(613) 569-3278 (fax)

http://www.heartandstroke.ca

http://www.fmcoeur.ca

2 (on Web or 888 phone), 4

(on 888 phone), 5,7,8

STURGE-WEBER SYNDROME

See also: Craniofacial

Disorders; Epilepsy; Glaucoma;

Klippel-Trenaunay Syndrome;

Nevi, Giant Congenital;

Neurofibromatosis; Tuberous

Sclerosis; Von Hippel-Lindau

Syndrome

Sturge-Weber Foundation

PO Box 418

Mount Freedom, NJ 07970

(800) 627-5482

(927) 895-4445

(927) 895-4846 (fax)

swfoffice@aol.com

http://www.sturge-weber.com

1,2,3,4,6, 7,8,9; online support

group

Sturge-Weber Foundation

(Canada) Inc

1960 Prairie Ave.

Port Coquitlam, BC CAN V3B

1V4

(604) 942-9209

(604) 942-6429 (fax)

kmoore@axionet.com

http://www.inforamp.net/~cvs0590

1,2,3,4,6,7,8,9

STUTTERING

National Center for Stuttering

200 East 33rd St.

New York, NY 10016

(800) 221-2483

(212) 683-1372 (fax)

executivedirector@stuttering.com

http://www.stuttering.com

2,4,5; Spanish materials

Speak Easy

c/o Mike Hughes

95 Evergreen Ave.

St John, NB CAN E2N 1H4

(506) 696-6799 (voice/fax)

(800) 345-9022(voice/fax)

info@speakeasycanada.com

http://www.speakeasycanada.com

1,2,4,5,6,7

Stuttering Foundation of America

PO Box 11749

Memphis, TN 38111-0749

(800) 992-9392

(901) 452-7343

(901) 452-3931 (fax)

stutterOvantek.net

http://www.stutteringhelp.org

2,4,6; Spanish materials

SUBACUTE NECROTIZING

ENCEPHALOPATHY

See: Mitochondrial Disorders

SUBACUTE SCLEROSING

PANENCEPHALITIS

See also: Epilepsy; Visual

Impairments

National Subacute Sclerosing

Panencephalitis Registry

c/o Paul Dyken, Director

Institute of Research in

Childhood Neurodegenerative

Diseases

PO Box 70191

Mobile, AL 36670-0191

(334) 478-6424

(334) 476-8277 (fax)

pdyken@aol.com

2,6,9

SUCCINYLCHOLINE

SENSITIVITY

See: Malignant Hyperthermia

SUDDEN INFANT DEATH

SYNDROME (SIDS)

Canadian Foundation for the

Study of Infant Deaths

586 Eglinton Ave E., Ste. 308

Toronto, ON CA M4P 1 P2

(800) 363-7437(Canada Only)

(416) 488-3260

(416) 488-3864 (fax)

sidsinfo@sidscanada.org

http://www.sidscanada.org/sids

1,2,3,4,5,5,7,8; French/English

materials

National Sudden Infant Death

Syndrome Resource Center

2070 Chain Bridge Rd., Ste. 450

Vienna, VA 22182

(703) 821-8955

(703) 821-2098 (fax)

sids@circsol.com

http://www.circsol.com/sids

1,2,4; Spanish materials

SUDECK ATROPHY

See: Reflex Sympathetic

Dystrophy Syndrome

SULFATIDOSIS, JUVENILE,

AUSTIN TYPE

See: Hearing Impairments;

Ichthyosis; Leukodystrophy;

Tay-Sachs Disease

SURDICARDIAC SYNDROME

See: Hearing

Impairments; Long Q-T

Syndrome

SWEDISH PORPHYRIA

See: Porphyria

SYNDACTYLIC OXYCEPHALY

See: Apert Syndrome

SYRINGOBULBIA

See: Syringomyelia

SYRINGOMYELIA

ASAP: American Syringomyelia

Alliance Project

PO Box 1586

300 Green St. Ste. 206

Longview, TX 75606-1586

(800) 272-7282

(903) 236-7079

(903) 757-7456 (fax)

http://www.asap4sm.com

SYSTEMIC ELASTORRHEXIS

OF TOURAINE

See: Pseudoxanthoma

Elasticum (PXE)

SYSTEMIC MAST CELL

DISEASE

See: Mast Cell Disease,

Systemic

TANGIER DISEASE

See: Tay-Sachs Disease

TARGET CELL ANEMIA

See: Cooley Anemia

TARUI DISEASE

See: Glycogen Storage

Diseases; Muscular Dystrophy

TAY SYNDROME

See: Ichthyosis

TAY-SACHS DISEASE

National Tay-Sachs and Allied

Diseases Association

200.1 Beacon St., Ste 204

Boston, MA 02135

(800) 90-NTSAD (68723)

(617) 277-4463

(617) 277-0134 (fax)

NTSADBoston@worldnet.att.net

http://www.ntsad.org

1,2,3,4,5,6, 7,8; Russian

materials

TEF (TRACHEOESOPHAGEAL

FISTULA)

See: VACTERL Association

TESCHLER-NICOLA/KILLIAN

SYNDROME

See: Pallister-Killian Syndrome

THALASSEMIA MAJOR

See: Cooley Anemia

THROMBOCYTOPENIA ABSENT

RADIUS (TAR) SYNDROME

See also: Heart Disorders;

Kidney Disorders; Short

Stature

Thrombocytopenia Absent Radius

Syndrome Association

212 Sherwood Dr.

Egg Harbor Twp, NJ 08234-7658

(609) 927-0418

(609) 653-8639 (fax)

1,2,3,4,9

THYROID DISORDERS

See also: Hypoparathyroidism

Thyroid Foundation of America

Ruth Sleeper Hall

RSL 350 40 Parkman St.

Boston, MA 02114-2698

(800) 832-8321

(617) 726-8500

(617) 726-4136 (fax)

info@tsh.org (for thyroid

questions)

admin@tsh.org

http://www.tfawev.org/pub/tfa

1,2,5,8

Thyroid Foundation of Canada

PO Box 1919

Station Main.

Kingston, ON CAN K7L 5J7

(800) 267-8822

(613) 544-8364

(613) 544-9731 (fax)

thyroid@kos.net

http://www.thyroid.ca

1,2,3,7,8

TOOTH AND NAIL SYNDROME

See: Ectodermal Dysplasias

TORSION DYSTONIA, IDIOPATHIC

See: Dystonia

TOURETTE SYNDROME

See also: Attention Deficit

Disorder; Obsessive-Compulsive

Disorder

Tourette Syndrome Association

42-40 Bell Blvd.

Bayside, NY 11361-2820

(718) 224-2999

(718) 279-9596 (fax)

ts@tsa-usa.org

http://www.tsa-usa.org

1,2,4,5,6, 7,8,9; Spanish

materials

Tourette Syndrome Foundation

of Canada

194 Jarvis St., Ste. 206

Toronto, ON CAN M5B 2B7

(800) 361-3120 (Canada only)

(416) 861-8398

(416) 861-2472 (fax)

tsfc.org@sympatico.ca

http://www.tourette.ca

1,2,3,4,5,6,7,8;to a very small

degree.; school in- servicing

program; print material in

French and English:; kids'

programs

TOXIC PARALYTIC ANEMIA

See: Anemia, Aplastic

TREACHER COLLINS

SYNDROME

See also: Craniofacial

Disorders; Hearing

Impairments

Treacher Collins Foundation

PO Box 683

Norwich, VT 05055-0683

(800) 823-2055

(802) 649-3050

http://www.treachercollinsfnd.org

1,2,3,4,5

TREMOR

International Tremor Foundation

7046 W 105th St.

Overland Park, KS 66212-1803

(888) 387-3667 (toll free)

(913) 341-3880

(913) 341-1296 (fax)

staff@essentialtremor.org

http://www.essentialtremor.org

1,2,3,4,5,7,8,9

TRICHODENTOOSSEOUS

SYNDROME; TYPES I, II & III

See: Ectodermal Dysplasias

TRICHODYSPLASIA-ONYCHOGRYPOSIS-HYPOHIDROSIS-CATARACT

See: Ectodermal Dysplasias

TRICHOFACIOHYPOHIDROTIC

SYNDROME

See: Ectodermal Dysplasias

TRICHONYCHODENTAL

DYSPLASIA

See: Ectodermal Dysplasias

TRICHONYCHODYSPLASlA

WITH XERODERNLR

See: Ectodermal Dysplasias

TRICHOOCULODERMOVERTEB

PAL SYNDROME

See: Ectodermal Dysplasias

TRICHOODONTOONYCHIAL

DYSPLASIA

See: Ectodermal Dysplasias

TRICHOODONTOONYCHO-HYPOHIDROTIC

DYSPLASlA

WITH CATARACT

See: Ectodermal Dysplasias

TRICHOODONTOONYCHODER

MAL SYNDROME

See: Ectodermal Dysplasias

TRICHOODONTOONYCHODYSP

LASIA WITH PILI TORTI

See: Ectodermal Dysplasias

TRICHOPOLIODYSTROPHY

See: Menkes Disease

TRICHORHINOPHALANGEAL

(TRP) SYNDROME

See: Ectodermal Dysplasias

TRICHOTILLOMANIA

See: Obsessive-Compulsive

Disorder

TRIPHALANGEAL THUMBS-ONYCHODYSTROPHY-DEAFNESS

See: Ectodermal Dysplasias;

Hearing Impairments

TRP SYNDROME, TYPE I

See: Ectodermal Dysplasias

TRPS SYNDROME, TYPE II

See: Ectodermal Dysplasias

TUBEROUS SCLEROSIS

See also: Autism; Epilepsy;

Learning Disabilities

Tuberous Sclerosis Alliance

801 Roeder Road # 750

Silver Spring, MD 20910

(800) 225-6872

(301) 562-9890

(301) 562-9870 (fax)

tsalliance@tsalliance.org

http://www.tsalliance.org

1,2,3,8,8; national volunteer

support network

Tuberous Sclerosis Canada

Sclerose Tubereuse

2443 New Wood Dr.

Oakville, ON CAN L6H 5Y3

(800) 347-0252

(905) 257-1997

(905) 257-4778 (fax)

1nfo@tscst.org

http://www.tscst.org

1,2,3,4,7,8

TURCOT SYNDROME

See: Brain Tumors; Cancer

Hereditary Colon Cancer

TURNER SYNDROME

See also: Growth Disorders

Turner Syndrome Society

of Canada

814 Glencairn Ave.

Toronto, ON CAN M6B 2A3

(800) 465-6744

(416) 781-2086

(416) 781-7245 (fax)

tssincan@web.net

http://www.turnersyndrome.ca

1,2,3,4,5,6; French Materials

Turner Syndrome Society

of the US

14450 TC Jester, Ste. 260

Houston, TX 77014

(800) 365-9944

(832) 249-9988

(612) 249-9987 (fax)

shel@turner-syndrome-us.org

http://www.turner-syndrome-us.org

1,2,3,4,5,8,9; Spanish

materials

TWIN-RELATED DISEASES

Conjoined Twins International

PO Box 10895

Prescott, AZ 86304-0895

dwdegeraty@excelonline.com

1,2,3,4,8,9

Twin Hope

2592 West 14th St.

Cleveland, OH 44113

(216) 687-2544

twinhope@twinhope.com

http://www.twinhope.com

1,2,3,4,5,7,&9; materials

available in Spanish, German,

and French: family guides

TWIN TO TWIN

TRANSFUSION SYNDROME

See also: Twin-Related Diseases

Twin to Twin Transfusion

Syndrome Foundation

411 Longbeach Parkway

Bay Village, OH 44140

(440) 899-8887

(440) 899-1184 (fax)

info@tttsfoundation.org

http://www.tttsfoundation.org

1,2,3,4,5,7,8,9

TYROSINEMIA, HEREDITARY,

HEPATORENAL TYPE/

TYROSINEMIA TYPE I,

TYROSYLUPJA

See also: Kidney Disorders/

Liver Disorders

Groupe Aide aux Enfants

Tyrosinemiques du Quebec

3162 Rue Granville

Jonquiere, QC CAN G7S 2B9

(418) 548-1580

gerard.tremblay@sympatico.ca

http://www.members.xoom.com/Tyrosine/tyrosine.html

2, 4, 8, 9; English/French

materials; support available in

Spanish

ULCERATIVE COLITIS

See: Crohn Disease & Colitis

UREA CYCLE DISORDERS

See also: Metabolic Disorders

National Urea Cycle Disorders

Foundation

4841 Hill St..

La Canada, CA 91011

(800) 386-8233

info@nucdf.org

http://www.nucdf.org

1,2,3,4,6,7,8,9

UROLOGIC DISORDERS

See: Incontinence; Kidney

Diseases, Hereditary; Kidney

Disorders

UROSTOMY

See: Ostgmy

URTICARIA PIGMENTOSA

See: Mast Cell Diseases

USHER SYNDROME

See also: Deaf-Blind; Hearing

Impairments; Retinitis

Pigmentosa; Visual

Impairments

Usher Around The World

c/o Kathie Anderson

PO Box 17318

Minneapolis, MN 55417

(612) 729-4630 (voice/TDD)

(612) 724-6982 (fax)

1,3

VACTERL ASSOCIATION

See also: Anorectal

Malformations; CHARGE

Association; Heart Disorders;

Kidney Disorders; Limb

Disorders; Spina Bifida

TEF/VATER International

Support Network

c/o Greg and Terd Burke

15301 Grey Fox Rd.

Upper Marlboro, MD 20772

(301) 952-6837

(301) 952-9152 (fax)

tefvater@ix.netcom.com

http://www.tefvater.org

1,2,3,7,8,9

VAN MEERKEREN I SYNDROME

See: Ehlers-Danlos Syndrome

VASCULAR MALFORMATIONS

See: Klippel Trenaunay

Syndrome; Sturge-Weber

Syndrome; Von Hippel-Lindau

Syndrome

VATER ASSOCIATION

See: VACTERL Association

VELO-CARDIO-FACIAL

SYNDROME

See also: CHARGE Association;

Craniofacial Disorders; Heart

Disorders

Northeast VCFS Support Group

2 Lansing Dr.

Salem, NH 03079

(603) 898-6332

MLADJA@aol.com

1,2,3,6,9;

international educational

foundation for research

Velo-Cardio-Facial Syndrome

Educational Foundation, Inc.

Upstate Medical University

University Hospital

708 Jacobsen Hall (C.D.U.)

750 E. Adams St.

Syracuse, NY 13210

(315) 464-6590

(315) 464-6593

vcfsef@mail.upstate.edu

http://www.vcfs.org

2,3,4,9

VENTILATOR USE

Citizens for Independence in

Living & Breathing

78 Golfwood Heights

Toronto, ON CAN M9P 3M2

(416) 244-2248 (phone/fax)

2,3,4,6,7,9

International Ventilator Users

Network

(IVUN)

4207 Lindell Blvd., #110

St Louis, MO 63108-2915

(314) 534-0475

(314) 534-5070 (fax)

http://www.postpolio.org/index.html

1,2,3,4,6,7,8

VENTRICULAR DEFECTS

See: Heart Disorders

VERMIS CEREBELLAR

AGENESIS

See: Joubert Syndrome

VESTIBULAR DISORDERS

See also: Balance Disorders

& Dizziness

Vestibular Disorders Association

PO Box 4467

Portland, OR 97208-4467

(800) 837-8428

(503) 229-8064 (fax)

veda@vestibular. org

http://www.vestibular.org

1,2,3,4; Spanish Materials

VISUAL IMPAIRMENT/

HEARING IMPAIIMRENT

See: Deaf-Blind

VISUAL IMPAIRMENTS

See also: Albinism &

Hypopigmentation; Glaucoma;

Macular Diseases; Retinitis

Pigmentosa; Retinoblastoma;

Septo-Optic Dvsplasia;

Usher Syndrome

American Council of the Blind

1155 15th St NW, Ste.1004

Washington, DC 20005

(800) 424-8666

(202) 467-5081

(202) 467-5085 (fax)

info@acb.org

http://www.acb.org

1,2,4,5,6

American Foundation

for the Blind

11 Penn Plaza, Ste. 300

New York, NY 10001

(800) 232-5463

(212) 502-7600

(212) 502-7662 (TDD)

afbinfo@afb.org

http://www.afb.org

1,2,4,5,6,8

Blind Children's Center

4120 Marathon St.

Los Angeles, CA 90029

(800) 222-3566

(800) 222-3567 (CA only)

(323) 664-2153

(323) 665-3828 (fax)

info@blindchildrenscenter.org

http://www.blindchildrenscenter.org

1,2,3,4,8; Spanish materials

Blind Children's Fund

4740 Okemos Rd.

Okemos, MI 48864

(517) 347-1357

(517) 347-1459 (fax)

blindchfnd@aol.com

http://www.blindchildrensfund.org

1,2,4,6

Blind Children's Fund

Resource Center

2971 53rd St. SE.

Auburn, WA 98092

(206) 735-6350 (voice/fax)

blindchildrensfund@charitiesusa.com

1,2,4,6

Braille Institute of America

741 N. Vermont Ave.

Los Angeles, CA 90029

(323) 663-1111

(323) 663-0867 (fax)

info@brailleinstitute.org

http://www.brailleinstitute.org

Canadian National Institute

for the Blind

1929 Bayview Ave.

Toronto, ON CAN M4G 3E8

(416) 486-2500

(416) 480-7417 CTDD)

(416) 480-7699 (fax)

marjerb@east.cnib.ca

http://www.cnib.ca

1,2,3,4,6, 7,8; French materials

Council of Families with

Vision Impairment

6212 W. Franklin St.

Richmond, VA 23226

(804) 288-0395

1,2,3,4,6,7

The Foundation for Fighting

Blindness

11435 Cranhill Drive

Owings Mill, MD, 21117-2220

(800) 683-5555 CTDD)

(410) 363-7139 (local TDD)

(410) 363-2393 (FAX)

Mpalmer@blindness.org

http://www.blindness.org

The Lighthouse National

Center for Vision and

Child Development

111 East 59th St.

New York, NY 10022

(800) 334-5497(voice)

(212) 821-9200 (voice)

(212) 821-9713 (TDD)

(212) 821-9705 (fax)

mbeck@lighthouse.org

http://www.lighthouse.org

1,2,4; Spanish materials

National Association for Parents

of Children with Visual

Impairments

PO Box 317

Watertown, MA 02471

(800) 562-6265

(617) 972-7441

(617) 972-7444 (fax)

napvi@perkins.pvt.k12.ma.us

http://www.spedex.com/napvi

1,2,3,5,6,7; Spanish materials

National Association for

Visually Handicapped

22 W 21st St., 6th Fl.

New York, NY 10010

(212) 889-3141

(212) 727-2931 (fax)

staff@navh.org

http://www.navh.org

1,2,4, 7; Spanish/Russian

Mandarin materials; large-print

lending library

National Braille Press

88 St. Stephen St.

Boston, MA 02115

(800) 548-7323

(617) 266-6160

(617) 437-0456 (fax)

orders@nbp.org

http://www.npb.org

1,2,7

National Organization of

Parents of Blind Children

National Center for the Blind

1800 Johnson St.

Baltimore, MD 21230

(410) 659-9314 x360

(410) 685-5653 (fax)

bcheadle@nfb.org

http://www.nfb.org

1,2,3,4,5,6,7; Spanish

materials.

Prevent Blindness America

500 E Remington Rd.

Schaumburg, IL 60173-4557

(800) 331-2020

(847) 843-2020

(847) 843-8458 (fax)

74777.100@compuserve.com

http://www.prevent_blindness.org

1,2,4,5,6, 7,8; Spanish

materials

Recording for the Blind

& Dyslexic

20 Roszel Rd.

Princeton, NJ 08540

(609) 520-8079

(609) 520-7990 (fax)

info2rfbd.org

http://www.rfbd.org

2

Vision World Wide, Inc.

5707 Brockton Dr., Ste. 302

Indianapolis, IN 46220-5481

(800) 431-1739

(317) 254-1332

(317) 251-6588 (fax)

info@visionww.org

http://www.visionww.org

1,2,4,

VITAMIN B12 METABOLISM;

INBORN ERROR OF

See: Cobalamin (B12)

Defiency

VITILIGO

The Canadian Vitiligo Society

Dr. Danuta Pawlowski

University Health Network

Toronto Western Hospital

8th FI., Rm. 542

399 Bathurst St

Toronto, Ontario CAN M5T 2S8

(416) 603-5721

(416) 603-2782 (fax)

National Vitiligo Foundation

611 South Fleishel Ave.

Tyler, TX 75701

(903) 531-0074

(903) 525-1234 (fax)

vitiligo@trimofran.org

http://www.vitiligofoundation.org

1,2,3,4,5,6,7,8,9

VON GIERKE DISEASE

See: Glycogen Storage

Diseases

VON HIPPEL-LINDAU

SYNDROME

See also: Ataxia; Balance

Disorders & Dizziness; Brain

Tumors; Visual Impairments

Von HippeI-Lindau Syndrome

Family Alliance

171 Clinton Rd.

Brookline, MA 02445-5815

(800) 767-4845

(617) 277-5667

(617) 734-8233 (fax)

info@vhl.org

http://www.vhl.org

1,2,3,4,5,7,8,9;

Spanish/French/German/

Dutch/Italian materials.

VON RECKLINGHAUSEN

DISEASE

See: Neurofibromatosis

VON WILLEBRAND DISEASE

See: Hemophilia

VROLIK DISEASE, TYPE II

See: Osteogenesis Imperfecta

WAGR SYNDROME

See also: Aniridia; Wilm's

Tumor

The WAGR Network

c/o Annie Prusakiewicz

2063 Regina Ave

Lincoln Park, MI 48146

(313) 381-4302

ReachingOutNet@aol.com

http://www.wagr.org

http://members.aot.com/ReachingOutNet/index.htm.

1,2,3,8,9

WALBAUM-DEHEANE-SCHLEMMER

SYNDROME

See: Ectodermal Dysplasias

WALKER-WARBURG

SYNDROME

See: Hydrocephalus;

Lissencephaly

WARBURG SYNDROME

See: Hydrocephalus/

Lissencephaly

WEBER SYNDROME

See: Sturge-Weber Syndrome

WEGENER GRANULOMATOSIS

See also: Immune Disorders

Wegener's Granulomatosis

Association (International)

PO Box 28660

Kansas City, MO 64188-8660

(800) 277-9474

(816) 436-8211 (fax)

wgsg@wgsg.org

http://www.wgassociation.org

1,2,3,4,5,5; international

conferences

WERDNIG-HOFFMAN DISEASE

See: Spinal Muscular Atrophy

WERLHOF DISEASE

See: Purpura, Idiopathic

Thrombocytopenia (ITP)

WERMER SYNDROME

See: Multiple Endocrine

Neoplasia I

WERNER SYNDROME

See: Progeria

WHISTLING FACE SYNDROME

See: Freeman-Sheldon

Syndrome

WHISTLING FACE-WINDMILL

VEIN HAND SYNDROME

See: Freeman-Sheldon

Syndrome

WHITE MATTER DISORDERS

See: Leukodystrophy

WHITE SPOT DISEASE

See: Vitiligo

WHITNALL-NORMAN

SYNDROME

See: Norrie Disease

WILLIAMS SYNDROME

See also: Autism; Attention

Deficit Disorder; Growth

Disorders; Heart Disorders;

Learning Disabilities; Noonan

Syndrome

Williams Syndrome Association

PO Box 297

Clawson, MI 48017-0297

(248) 541-3630

(248) 541-3631 (fax)

wsaoffice@aol.com

http://www.wiiliamssyndrorne.org

1,2,3,4,5,5,8; DNA research

bank, annual music camp

WILLIAMS-BEUREN

SYNDROME

See: Williams Syndrome

WILM'S TUMOR

See: WAGR Syndrome,

Genitalia, Ambiguous

WILSON'S DISEASE

Wilson's Disease Association

4 Navaho Dr.

Brookfield, CT 06804-3124

(800) 399-0266

(203) 775-9666

hasellner@worldnet.att.net

http://www.wilsonsdisease.org

1,2,7,8

WISKOTT-ALDRICH

SYNDROME

See: Immune Disorders;

Purpura, Idiopathic

Thrombocytopenia

WOLF SYNDROME

See: Wolf-Hirschhorn

Syndrome

WOLF-HIRSCHHORN

SYNDROME

See also: Chromosome 4p-4p- Parent

Network

C/o Bonnie Radtke

1874 NW 108 Ave

Plantation, FL, 33322

(954) 476-9345

bbr@juno.com

http://members.aol.com/lbent503/whs

1,2,3,6,9

X-LINKED ALPHA

THALASSEMIA

See: Alpha Thalassemia

Mental Retardation

Syndrome, X-linked

X-LINKED COPPER DEFICIENCY

See: Menkes Disease

X-LINKED COPPER

MALABSORPTION

See: Menkes Disease

X-LINKED MYOTUBULAR

MYOPATHY

See: Myotubular Myopathy, X-Linked;

Muscular Dystrophy

XANTHOGRANULOMATOSIS,

JUVENILE

See: Histiocytosis

XERODERMA PIGMENTOSUM

Canadian Organization of Rare

Disorders (CORD)

PO Box 814

Coaldale, AB CAN T1M 1M7

(877) 702-7273

(403) 345-4544

(403) 345-3948 (fax)

office@cord.ca

http://www.cord.ca

1,2,3,4

XP Society

PO Box 4759

Poughkeepsie, NY 12602

(518) 851-2612 (phone/fax)

http://www.xps.or

XERODERMA-TALIPES-ENAMEL

DEFECT

See: Ectodermal Dysplasias

ZANIER-ROUBICEK SYNDROME

See: Ectodermal Dysplasias

ZELLWEGER SYNDROME

See: Leukodystrophy

ZIEHEN-OPPENHEIM DISEASE

See: Dystonia

KEY TO SERVICES

1 Periodical/newsletter

2 Informational materials

3 Networking/matching

4 Referrals to local resources

5 Local chapters

6 National conferences

7 National advocacy efforts

8 Fund research

9 Maintain research registry

Matching Resources

This directory of "Matching Resources"--both national and international--can help some parents who have children with extremely rare conditions or unique combinations of disabilities. Others may be dealing with unique family situations, such as single parenting, raising twins, or adoption. These networking organizations do parent-to-parent matching based on children's disabilities and, in some cases, other unique family situations. Most maintain ongoing contact with other groups worldwide.

Unless otherwise noted, all services are provided free of charge. This symbol, indicates an e-mail address. All international calls from the US or Canada require dialing 011 before the number. Please be aware of time zone differences when making any calls, particularly international ones. (Unless otherwise noted, telephone numbers are for voice only.)

Birth Defect Research for

Children

930 Woodcock Rd., Ste. 225

Orlando, FL 32803

(407) 895-0802

(407) 895-0824 (fax)

http://www.birthdefects.org

abdc@birthdefects.org

1,2,3,4,5,9

Canadian Organization for Rare

Disorders (CORD)

PO Box 814

Coaldale, AB CAN T1M 1M7

(877) 302-7273

(403) 345-4544

(403) 345-3948 (fax)

office@cord.ca

http://www.cord.ca

1,2,3,4

Easter Seals

National Headquarters

230 West Monroe St., Ste. 1800

Chicago, IL 60606

(800) 221-6827

(312) 726-6200 (voice)

(312) 726-4258 (TDD)

(312) 726-1494 (fax)

info@easter-seals.org

http://www.easter-seals.org

1,2,4,5,8; Early Intervention

Services; Physical,

Occupational Speech

Therapies; Job Training &

Employment; Inclusive Child

Care; Adult Day Services,

Camping & Recreation

Easter Seals Society

1185 Eglinton Ave E. St 706

North York,

ON CAN M3C-3C6

(416) 421-8377

(416) 696-1035 (fax)

info@easterseals.org

http://www.easterseals.org

1,4,5,8; Financial Assistance,

Camping

MUMS Mothers United for

Moral Support

c/o Julie Gordon

150 Custer Ct

Green Bay, WI 54301-1243

(920) 336-5333

(877) 336-5333 (Parents only

please)

(920) 339-0995 (fax)

mums@netnet.net

http://www.netnet.net/mums/

1,3,4

National Organization for Rare

Disorders (NORD).

100 Rt. 37, PO Box 8923

New Fairfield, CT 06812-8923

(800) 999-6673

(203) 746-6518

(203) 746-6481 (fax)

orphan@rarediseases.org

http://www.rarediseases.org

1,3,4,5,7,8

OTHER RESOURCES

Search & Respond

c/o Exceptional Parent

Magazine

65 East Route 4

River Edge, NJ. 07661

(201) 489-0633 (fax)

epedit@aol.com

http://www.eparent.com

Parents, professionals, and

other searching for

information, networking, or

advice on a disability or

related problem may send

correspondence to Exceptional

Parent's Search & Respond

column in the magazine

and/or on the Web site:

http://www.eparent.com.

Some letters are selected for

publication in the monthly

column. Anyone offering a

suggestion may write a

"Respond" letter, which will

be forwarded and may also be

published.
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Copyright 2002 Gale, Cengage Learning. All rights reserved.

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Date:Jan 1, 2002
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