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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 throughout this directory at the bottom of the 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;
Hypopigmentation

A-BETA-LIPOPROTEINEMIA
See: Tay-Sachs Disease

ABDOMINAL MIGRAINE
See: Cyclic Vomiting Syndrome

ACHONDROPLASlA
See: Growth Disorders

ACID MALTASE DEFICIENCY
See also: Glycogen Storage
Diseases; Muscular Dystrophy

(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

ACIDEMIA, ISOVALERIC (IVA)
See: Acidemia, Organic

ACIDEMIA, METHYLMALONIC
See: Acidemia, Organic

ACIDEMIA, ORGANIC
See also: Fatty Oxidation
Disorder; 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
1,2,3,7,8

ACIDEMIA, PROPIONIC
See: Acidemia, Organic

ACOUSTIC NEUROMA
See also: Balance Disorders &
Dizziness; Brain Tumors;
Hearing Impairments;
Neurofibromatosis;
Neurofibromatosis, Type 2;
Vestibular Disorders

Acoustic Neuroma Association
600 Peachtree Pkwy., Ste. 108
Cumming, GA 30041
(404) 237-8023
(404) 237-2704 (fax)
??anausa@aol.com
http://www.anausa.org
1,2,4,6,8

Acoustic Neuroma Association
of Canada
PO Box 369
Edmonton, AB CAN T5J 2J6
(800) 561-2622 (voice/TDD,
Canada only)
(403) 428-3384 (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 DYSOSTOSlS,
NAGER TYPE
See: Nager & Miller Syndromes

ACROMEGALY
See: Multiple Endocrine
Neoplasia I; Pituitary 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
??nadf@aol.com
http://medhlp.netusa.net/www/n
adf.htm
1,2,3,4,5

ADRENOCORTICOTROPIC
HORMONE DEFICIENCY
See: Adrenal Disorders;
Pituitary Tumors

ADRENOGENITAL SYNDROME
See: Adrenal Disorders

ADRENOLEUKODYSTROPHY
See: Leukodystrophy; Tay-Sachs
Disease

ADRENOLEUKODYSTROPHY,
NEONATAL
See: Leukodystrophy; Tay-Sachs
Disease

AGENESIS 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
3

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 PoloFields Ct.
Lexington, KY 40245
(502) 244-9152
(937) 368-2137 (fax)
??AICNews@aol.com
http://www.Aicardi.com
1,2,3,6,7,8

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 Pl.
Tigard, OR 97223
(503) 639-6217
??alagille@teleport.com
http://www.alagille.org
1,2,3,4,9

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) 887-2310 (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
710 C St., Ste. 11
San Rafael, CA 94901
(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-ONYCHODYSPLASlA-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
(612) 703-9979
(612) 703-9977 (fax)
??aina@alpha1.org
http://www.alpha1.org
1,2,3,4,5,6,7,9

ALPHA-GALACTOSIDASE
DEFICIENCY
See: Fabry Disease

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)
1,2,4,5,9

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)
??editor@amputee-coalition.org
http://www.amputee-coalition.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

AMSTERAM 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

Aplastic Anemia 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)
??aamdsuffice@aol.com
http://www.aamds.org
1,2,3,5,6,8,9, French/German/
Japanese/Spanish materials

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
1,2,3,4,5,5,7,8,9;
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) 655-0391
??asf@adminsys.com
http://www.chem.ucsd.edu/asf
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, T0L 1WO
(403) 931-2415 (voice/fax)
??cass@cadvision.com
http://www.rigel.phys.ualberta.ca
/cass
1,2,3,5,6,9; French materials

ANGIO-OSTEOHYPERTROPHY
SYNDROME
See: Klippel-Trenaunay
Syndrome

ANGIOKERATOMA CORPORIS
DIFFUSUM
See: Fabry Disease

ANGIOMATOSlS 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
(514) 761-5998
??cfar@generation.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) 456-2350 (fax)
??aemcgenetics.icdc.com
http://www.ioi.com/ca
1,2,3,4,6,9

ANORECTAL MALFORMATIONS
See also: Intestinal Pseudo-Obstruction
Syndrome

Pull-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)
??info@anad.org
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

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)
See: 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)
??spitts@arthritis.org
http://www.arthritis.org
1,2,3,4,5,6,7,8; Spanish materials

Arthritis Society
#1700, 393 University Ave.
Toronto, ON CAN M5G 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 Arthritis and
Musculoskeletal and Skin
Diseases Information
Clearinghouse (NAMSIC)
Information Specialist
1 AMS Circle
Bethesda, MD 20892-3675
(301) 881-2731
(301) 563-2966 (TDD)
(301) 718-6366 (fax)
http://www/nih.gov/niams/

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 PARALYSIS
See: Guillain-Barre Syndrome

ASPERGER SYNDROME
See: Autism

ASTHMA
See: Asthma & Allergy

ASTHMA & ALLERGY
See also: Food Allergy; Latex
Allergy; Lung Diseases

Allergy and Asthma Network
Mothers of Asthmatics, Inc.
2751 Prosperity Ave., Ste. 150
Fairfax, VA 22031-4397
(800) 878-4403
(703) 641-9595
(703) 573-7794 (fax)
??aanma@aol.com
http://www.aanma.org
1,2,7

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: Ataxia Telangiectasia;
Charcot-Marie-Tooth Disease;
Friedreich Ataxia; Von Hippel-Lindau
Syndrome

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, FL 33442
(800) 543-5728
(954) 481-6611
(954) 725-1153 (fax)
??info@atcp.org
http://www.atcp.org
1,2,3,6,7,8,9 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
(781) 455-9895
(781) 444-5466 (fax)
??adin@gis.net
http://www/.addinfonetwork.org
2,3,4,5,6,8

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.com/
~chaddcanada/index.html
1,2,3,5,5,9; Spanish materials

CHADD: Children and Adults
with Attention Deficit Disorders
8181 Professional Pl., Ste. 201
Landover, MD 20785
(800) 233-4050
(301) 306-7070
(301) 306-7090 (fax)
??national@chadd.org
http://www.chadd.org
1,2,3,5,6,9; 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

AURICULO-OCULO-VERTEBRAL
SYNDROME
See: Goldenhar Syndrome

AUTISM
See also: Autism and Sensory
Impairments; Language Disorders

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
(610) 649-9139
(610) 649-0974 (fax)
http://www.autcom.org

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
(800) 328-8476
(301) 657-0881
(301) 657-0869 (fax)
http://www.autism-society.org/
1,2,4,5,6,7,8;
Chinese/French/Spanish/
Vietnamese materials

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 46307
(219) 662-1311
(219) 662-0638 (fax)
??chart@netnitco.net
http://ww2.netnitco.net/users/ch
art/maap.htm
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 Barrel
7510 Oceanfront Ave.
Virginia Beach, VA 23451
(757) 428-9036
(757) 428-0019 (fax)
3,4,7,9

CAN (Cure Autism Now)
5455 Witshire 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
2853 E. 10th 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
2,4,8

The National Alliance for Autism
Research
414 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/asp
erger
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.unc.edu/depts/
teacch
2,4,5

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.ws
pws
2,9

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

AUTOIMNIUNE MYOCARDITIS
See: Autoimmune Disorders

B12 METABOLISM; INBORN
ERROR OF
See: Cobalamin (B12)
Deficiency

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/TTY)
(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

BATTEN DISEASE
See also: Tay-Sachs Disease

Batten Disease Support and
Research Association
120 Humphries Dr., Ste 2
Reynoldsburg, OH 43068
(800) 448-4570
(740) 927-4298
(603) 887-0210 (fax)
??bdsra1@bdsra.com
http://www.bdsra.org
1,2,3,4,5,6,8,9;
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
??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)
??dockteeb@nysomr.em1.com
2,3,4,5,5,7 genetic counseling,
diagnostic testing

BATTEN-MAYOU SYNDROME
See: Batten Disease

BATTEN-SPIELMEYER-VOGT
DISEASE
See: Batten Disease

BBB SYNDROME
See: Opitz Syndrome

BBBG 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)
??A800BWSN@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
2,3,4,6,9

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 & Bone 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@bmtnews.org
http://www.bmtnews.org
1,2,3,9; legal referral for insurance
problems

BONE TUMOR-EPIDERMOID
CYST-POLYPOSIS
See: Peutz-Jeghers Syndrome;
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)
??FFGD@iffgd.org
http://www.iffgd.org
1,2,4,5 (referrals to local
physicians),6,9; One-one
telephone support.

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@biaus.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

BRAIN STEM
MALFORMATIONS
See: Arnold-Chiari
Malformation; Joubert
Syndrome; Syringomyelia

BRAIN TUMORS
See also: Acoustic Neuroma;
Brain Injury; Cancer; Epilepsy;
Pitutitary Disorders/Tumors;
Von Hippel-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
1,2,3,4,5,6, 7; 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 materials

Brain Tumor Foundation of
Canada
650 Waterloo St., Ste. 100
London, ON CAN N6B 2R4
(519) 642-7755
(519) 642-7192 (fax)
??eallman1@juno.com
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
(212) 448-1022 (fax)
??cbtfny@aol.com
http://www.cbtf.org
1,2,3,4,6,8

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

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
2153 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: Leukodystrophy; Tay-Sachs
Disease

CANCER
See also: Bone Marrow
Transplant; Brain Tumors;
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 Alcorn Ave, Ste. 200
Toronto, ON CAN M4V 361
(416) 961-7223
(416) 961-4189 (fax)
??lfernand@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@candlelighters.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;
French/Dutch/Finnish/Polish/
German materials

CANCER; BRAIN
See: Brain Tumors

CANCER; GASTROINTESTINAL
See: Peutz-Jeghers Syndrome;
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; Carnitine
Deficiency Syndromes;
Muscular Dystrophy

CARPENTER SYNDROME
See: Craniofacial Disorders

CARTILAGE-HAIR HYPOPLASlA
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
190 Britannia Rd. E. Unit 11
Mississauga. ON CAN L4Z 1W6
(800) 363-7296 (Canada only)
(905) 507-6208
(905) 507-4673 (fax)
http://www.celiac.ca
1,2,4,5,6,7,6,9; 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
1,2,3,9

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 MGL 1C5
(416) 244-9686
(416) 244-6543 (fax)
??ofcp@ofcp.on.ca
http://www.ofcp.on.ca
1,2,3,4,5,6,9; 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 (TTY)
(202) 776-0414 (fax)
??ucpainc@aol.com
http://www.ucpa.org
1,2,3,4,5,6,7,8; Spanish materials,
provides direct services through
158 affiliate programs

United Cerebral Palsy of NYC
80 Maiden Ln., 8th Fl.
New York, NY 10038-4811
(212) 683-6700
??infoucp@aol.com
http://www.ucpnyc.org
1,2,3,4,5,6,7,6

CEREBROOCULORENAL
DYSTROPHY
See: Lowe Syndrome

CEREBROSIDE LIPIDOSIS
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
601 Upland Ave.
Upland, PA 19015
(800) 606-2682
(610) 499-7486
(610) 499-7487 (fax)
??cmtassoc@aol.com
http://www.charcot-marie-tooth.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;
VATERL 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: Alagille Syndrome

CHOLESTERYL ESTER STORAGE
DISEASE
See: Tay-Sachs Disease

CHONDRODYSPLASIA
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
(708) 535-2864
??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 Canada: Support
Organization for Trisomy 18, 13
and Related Disorders
760 Brant St., Ste. 420
Burlington, ON CAN L7R 4B8
(800) 668-0898 (Canada only)
(905) 632-7755
(905) 632-5997 (fax)
??barbsoft@aol.com
http://www.trisomy.org
1,2,3,4,5,6,8,9; also covers other
rare trisomy disorders

SOFT: Support Organization for
Trisomy 18, 13 and Related
Disorders
2982 S. Union St.
Rochester, NY 14624
(800) 716-7638
(716) 594-4621 (voice/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

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) 641-3800
(937) 463-5325 (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
1,2,3,6,6,9

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
See also: Chromosome 13 &
18 Disorders

Chromosome 18 Registry &
Research Society
6302 Fox Head
San Antonio, TX 78247
(210) 657-4968 (voice/fax)
??office@chromosome18.org
http://www.chromosome18.org
1,3,4,6,6,9

CHROMOSOME 21 RING
See: Chromosome Deletions

CHROMOSOME 22 RING
See also: Chromosome
Deletions

Chromosome 22 Central
232 Kent Ave.
Timmins, ON CAN P4N 3C3
(705) 268-3099 (voice/fax)
??mum2_1@hotmail.com
http://www.nt.net/~a815/
chr22.htm
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 46XY/47,XXY
See: Klinefelter Syndrome

CHROMOSOME 47,XXY
See: Klinefelter Syndrome

CHROMOSOME 47,XYY
See: Klinefelter Syndrome

CHROMOSOME 48,XXXY
See: Klinefelter Syndrome

CHROMOSOME 48,XXYY
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.members.aol.com/cd
ousa/cdo.htm
1,2,3,9; Also deals with
chromosome translocations

CHROMOSOME DISORDERS
See also: Chromosome 13 &
15 Disorders

Chromosome 22 Central
232 Kent Ave.
Timmin, ON CAN P4N 3C3
(705) 268-3099 (voice/fax)
[Omega]mum2_1@hotmail.com
http://www.nt.net/~a815/chr22.
htm
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
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
PO Box 220398
Charlotte, NC 28222-0398
(800) 442-3437
(704) 365-9755 (fax)
??info@cfids.org
http://www.cfids.org
1,2,4,6,8

CHRONIC INFLAMMATORY
DEMYELINATING
POLYNEUROPATHY
See: Autoimmune 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.cleft.com
2,4,5,6,7; 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 Teresa Wall
PO Box 552
Stanleytown, VA 24168-0552
(540) 629-2369
(540) 647-3739 (fax)
??cockayne@kimbanet.com
1,2,3,9; Spanish and Japanese
materials

COFFIN-SIRIS' SYNDROME
See: Ectodermal Dysplasias

COFFIN-LOWRY SYNDROME

Coffin-Lowry Syndrome
Foundation
3045 255th Ave. SE
Issaquah, WA 98209
(425) 427-0939
??clsfoundation@yahoo.com
http://www.freeyellow.com/
members3/clsf/index/html
1,2,3,9

COGAN'S SYNDROME
See: Autoimmune Disorders

COLITIS
See: Crohn Disease & Colitis

COLOBOMA
See: Visual Impairments

COMPLEX REGIONAL PAIN
SYNDROME
See: Reflex Sympathetic
Dystrophy Syndrome

CONGENITAL ADRENAL
HYPERPLASIA (CAH)
See: Adrenal Disorders

CONGENITAL LIPOID
HYPERPLASlA
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
26th Ave., Ste. 203
Flushing, NY 11354
(800) 522-7222
(718) 321-2873
(718) 321-3340 (fax)
??nacf@aol.com
http://www.thalassemia.org
1,2,3,4,5,6,7,8,9;
Italian, Greek, Chinese 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.sirna@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) 753-2357
(860) 676-8166
(860) 676-8337 (fax)
??cdlsintl@iconn.net
http://cdlsoutreach.org

CORPUS CALLOSUM
DISORDERS
See: Agenesis of the Corpus
Callosum; Aicardi Syndrome

COX DEFICIENCY
See: Leigh Disease;
Mitochondrial Disorders

CRANIOCARPOTARSAL
DYSTROPHY
See: Freeman-Sheldon
Syndrome

CRANIOECTODERMAL
SYNDROME
See: Ectodermal Dysplasias

CRANIOFACIAL DISORDERS
See also: Apert Syndrome/
Blepharophimosis, Ptosis,
Epicanthus Inverus Syndrome
(BPES); Chromosome11q
Disorders; Cleft Palete;
Dubowitz Syndrome; Freeman-Sheldon
Syndrome; Goldenhar
Syndrome; Holoprosencephaly;
Microtia; Moebius Syndrome;
Nager & Miller Syndromes;
Nevi, Giant Congential;
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) 944-2488 (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

Craniofacial Foundation of
America
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.erlanger org/cranio
1,2,3,5,7

Craniosynostosis and Parents
Support, Inc. (CAPS)
1420 S. Gasaway Dr.
Derby, KS 67037
(877) 686-CAPS (2277)
(316) 789-9924
??stpnjep@aol.com
http://caps2000.org

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
1,2,3,5,9; financial assistance for
medical-related travel

Forward Face: The Charity
for Children with
Craniofacial Conditions
Inst. of Reconstructive Plastic
Surgery
317 34th St., Rm. 901A
New York, NY 10016
(800) 393-3223
(212) 684-5860
(212) 684-5864 (fax)
1,2,3,4

Let's Face It
PO Box 29972
Bellingham, WA 98228-1972
(360) 676-7325
??letsfaceit@faceit.org
http://www.faceit.org/faceit/
1,3; Publishes annual
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

Tennesse Craniofacial Center
PO Box 280297
Dallas, TX 75228
(800) 535-3643
(972) 994-9902
(972) 240-7607 (fax)
??dnkm90@prodigy.com
http://www.masterlink.comchildren
1,2,3,4,5,6,9; Spanish materials;
Financial assistance for related
expenses; Annual family retreat

CRANIOSYNOSTOSIS
See: Craniofacial Disorders

CRI DU CHAT SYNDROME

5p- society
PMB-502
7108 Katella Ave.
Stanton, CA 90680
(888) 970-0777
(714) 901-1544
(562) 920-5240 (fax)
??fivepminus@aol.com
http://www.fivepminus.org
1,2,3,6,7,9

CRIB DEATH
See: Sudden Infant Death
Syndrome (SIDS)

CRIGLER-NAJJAR
See: Liver Disease and
Trasplant

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

Crohn's and Colitis Foundation
of Canada
21 St. Clair Ave. E., Ste. 301
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)
1,2,3,4,7,8

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)
??cvsadwaites@msn.com
http://www.beaker.iupui.edu/cus
a
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@ccff.ca
http://www.ccff.ca/~cfwww/
index.html
1,2,5,6,7,8,9; French, German,
Spainish, and Russian 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
(510) 482-8119
??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. 150
1102 Bates St.
Houston, TX 77030-2399
(832) 824-4387
(832) 825-4347 (fax)
??cmv@bcm.tmc.edu
http://www.bcm.tmc.ed4/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
(612) 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
(301) 588-6545 (TDD)
(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.nfadb.org
1,2,3,4,6,7,9; 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

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

DEMOODONTODYSPLASIA
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
National Service Ctr.
1660 Duke St.
Alexandria, VA 22314
(800) 342-2383
(703) 549-1500
(703) 549-6995 (fax)
http://www.diabetes.org
1,2,4,5,6,7,6

Canadian Diabetes Association
15 Toronto St., Ste. 800
Toronto, ON CAN M5C 2E3
(416) 363-3373
(416) 363-3393 (fax)
??info@diabetes.ca
1,2,4,6,7,8; 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 Fem 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

Down Syndrome Society of
Rhode Island
99 Bald Hill Rd.
Cranston, RI 02920
(401) 460-5337 (fax)
??dssri@aol.com
1,2,3,4

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

Foundation for Children with
Down Syndrome (NJ office)
355 Bennetts Mills Rd.
Jackson, NJ 08527
(718) 623-0121

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 Reseasrch Foundation
933 First Colonial Rd., Ste. 109
Virginia Beach, VA 23454
(757) 425-1969
(757) 425-1822 (fax)
??illeichtman@macs.net
http://wwwtri21.org
2,4,7,8,9

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)
??INATTIC1@aol.com
http://dubowitz.org

DUCHENNE MUSCULAR
DYSTROPHY
See: Muscular Dystrophy

DWARFISM
See also: Growth Disorders;
Short Stature

Billy Barb/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/~cfig
one/mdr/Index.htm
2,3; physician referrals;
international membership

DYGENESIS OF THE
CORPUS CALLOSUM
See: Agenesis of the Corpus
Callosum

DYSAUTONOMIA

National Dysautonomia Research
Foundation (NDRF)
PO Box 211153
Eagan, MN 55121-2553
(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: Familial Dysautonomia

DYSKERATOSIS, CONGENITAL
See: Ectodermal Dysplasias

DYSLEXIA
See also: Attention Deficit
Disorder; Learning Disabilities

Dyslexia Research Institute
5746 Centerville Rd.
Tallahassee, FL 32308
(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
1,2,3,4,5,6,7,8,9; 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
(312) 755-0198
(312) 803-0138 (fax)
??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. #510
Los Angeles, CA 90048
(323) 651-3038
(323) 651-1366 (fax)
??ednfboard@aol.com
http://www.ednf.org
1,2,3,4,6,8

EINSTEIN SYNDROME
See: Hearing Impairments;
Kidney Diseases, Hereditary;
Vision Impairments

ELASTORRHEXIS
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

EHCEPHALOMYELOPATHY
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)
??debraorg@crds.com
http://www.debra.org
1,2,3,4,5,6,7,8, 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: VATERL 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

Multiple Hereditary Exostoses
(MHE) Coalition
http://www.geocities/
mhecoalition

MHE and Me--A Support Group
or Kids With Multiple Hereditary
Exostoses
14 Stony Brook Dr.
Pine Island, NY 10969
(845) 258-6058
??mheanddme@yahoo.com
http://www.geocities.com/
mheandme
1, (on Web site),2,3; Some info. in
Spanish

MHE Family Support Group
Chele Zelina
8838 Holly Ln.
Olmstead Falls, OH 44138
??chelezl@aol.com
http://www.radix.net/~hogue/
mhe.htm

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

FACIO-AURICULO-VERTEBRAL
ANOMALY
See: Goldenhar Syndrome

FACIO-CARDIO-CUTANEOUS
SYNDROME
See: Cardio-Facio-Cutaneous
Syndrome

FACIOGENITAL SYNDROME
See: Aarskog Syndrome

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

FAMILIAL ATAXIA
See: Ataxia; Friedreich Ataxia

FAMILIAL DYSAUTONOMIA

Dysautonomia Foundation
343 Clarke Ave. W., Ste. 1103
Thornhill, ON CAN L4J 7K5
(905) 882-7725
(905) 764-7752 (fax)
1,2,3,4,5,6,8,9

Dysautonomia Foundation
633 3rd Ave., 12th Fl.
New York, NY10017
(212) 949-6644
(212) 682-7625 (fax)
1,2,3,4,5,6,7,8,9

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)

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)
??fen@mail.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.accessone.com/
~delin
1,2,3,4,5,6,9

Fetal Alcohol Support Network
2266 Homeland Dr.
Mississauga, ON CAN L5K 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)

FIBROUS DYSPLASIA,
MONOSTOTIC, POLYSTOTIC
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 Network
10400 Eaton Pl., Ste. 107
Fairfax, VA 22030-2208
(800) 929-4040
(703) 691-2713 (fax)
??fan@worldweb.net
http://www.foodallergy.org
1,2,3,4,6,7

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
171 12th St., Ste. 100
Oakland, CA 94607-4911
(800) 688-8765
(510) 763-6223 (fax)
??NATLFX@sprintmail.com
http://www.Fragile.X.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: Peutz-Jeghers Syndrome;
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: Peutz-Jeghers Syndrome;
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)
??iBishopJ@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 Conneticut 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
of Australia, Inc. (AGSA)
66 Albion St,
Surry Hills, Australia NSW 2010
(02) 9211 1462,
(02) 9211 8077 (fax)
??iagsa@oze.com.au
http://www.agsagenetisupport.org
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
(603) 898-0705 (fax)
??MLADJA@aol.com
http://www.vcfsef.org
1,2,3,6

GENITALIA, AMBIGUOUS
See also: Hermaphroditism

Ambiguous Genitalia
Support Network (AGSN)
PO Box 313
Clements, CA 95227-0313
(209) 727-0313 (voice/fax)
??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 St.
San Francisco, CA 94104
(800) 826-6693
(415) 986-3162
??info@glaucoma.org
http://www.glaucoma.org
1,2,3,4,8; Spanish brochures
available.

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 Group of
North America
15110 Tenth 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
(319) 785-6038 (voice/fax)
1,2,3,4,6,8

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-CHAUDHRY-MOSS
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://home.pacbell.net/cgda/
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)
??hgfi@hyfound.org
http://www.hgfound.org
1,2,3,4,5,6,8,9; 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.webmast.com/gbs/

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

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

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
9745 E. Hampden Ave., Ste. 300
Denver, CO 80231-4923
(800) 648-4327 (voice/TDD)
(303) 695-7797 (voice/TDD)
(303) 695-7789 (fax)
??jostetter@aol.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@nwd.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://www.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 (TDD)
(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.nygh.on.ca
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) 706-1176
(214) 706-2139 (fax)
??inquire@amhrt.org
http://www.amhrt.org/
1,2,4,5,6,7,8,9 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@compuserve.com
??myer106w@cclc.gov
http://www.csun.edu/~hfmth006/chaser
http://www.csun.edu/~hfmth006
chaser/chaser-news/html
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

H.E.A.R.T.S. Connection Famiy
Resource Center
3101 N. Sillect Ave. Ste. 115
Bakersfield, CA 93308
(661) 328-9055 ext. 282
(661) 328-9940 (fax)

Kids With Heart National
Association for Children's Heart
Disorders, Inc.
1578 Careful Dr.
Green Bay, WI 54304-2941
(800) 538-5390 (phone/fax-US only)
(920) 498-0058 (phone/fax-outside US)
??ikdswhrt@execpc.com
http://www.execpc.com/~kdswhrt/
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

HEMISHPERECTOMY
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) 933-7944
(514) 933-8916 (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
Internation, 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

HERMANSKY-PUDLAK
SYNDROME
See also: Albinism &
Hypopigmentation; Visual
Impairments

Hermansky-Pudlak Syndrome
Network Inc.
1 South Rd.
Oyster Bay, NY 11771
(800) 789-9477
(516) 922-3440
(516) 922-4022 (fax)
??appell@worldnet.att.net
http://www.medhelp.org/web/hspn.htm
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 3070
Ann Arbor, MI 48106-3070
(734) 994-7369
(734) 994-7379 (fax)
??info@isna.org
http://www.isna.org
1,2,3,6

HERNIA, DIAPHRAGMATIC

CHERUBS
PO Box 1150
Creedmoor, NC 27522
(919) 693-8158
??Cherubs@gloryroad
http://www.gloryroad.net/~cherubs
1,2,3,4,7,9

HERS DISEASE
See: Glycogen Storage
Diseases; Muscular Dystrophy

HIRSCHSPRUNG 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: Brain Stem
Malformations; Chromosomal
Abnormalities; 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 Welborn St.
Dallas, TX 75219
(800) 421-1121 ext. 8411
(214) 559-8411
(214) 559-7835 (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 SYNDROME
See: Mucopolysaccharidosis;
Tay-Sachs Disease

HURLER/SCHEIE SYNDROME
See: Mucopolysaccharidosis;
Tay-Sachs Disease

HUTCHINSON-GILFORD
SYNDROME
See: Progeria

HUTCHINSON-WEBER-PEUTZ
SYNDROME
See: Peutz-Jeghers Syndrome;
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/
1,2,3,4,6,7; Spanish materials

Hydrocephalus Support
Group, Inc.
PO Box 4236
Chesterfield, MO 63006-4236
(636) 532-8228
(636) 995-4108 (fax)
??hydrobuff@postnet.com
1,2,3,4,5,6

National Hydrocephalus
Foundation
12413 Centralia Rd.
Lakewood, CA 90715-1623
(888) 260-1789 (msg. center)
(562) 402-3523
(562) 924-6666 (fax)
??hydrobrat@earthlink.net
http://www.geocities.com/
HotSprings/villa/2300
1,2,3,4,5,7; videos and cassettes
available

HYDROCEPHALUS,
OBSTRUCTIVE
See: Dandy-Walker Syndrome

HYPERAMMONEMIA
See: Urea Cycle Disorders

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; Language
Disorders

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
1,2,3,5,6,9

American Hyperlexia 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

HYPERLIPODEMA
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: Thyroid Disorders

Hypoparathyroidism
Association, Inc.
2835 Salmon St.
Idaho Fall, ID 83406
(208) 524-3857
(208) 524-2619 (fax)
http://www.FP1.cyberhighway.
net/~hpthnews/
1,2,3

HYPOPIGMENTATION
See: Albinism &
Hypopigmentation; 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

HYPOTHYROID 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

ICHTHYOSIS

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
2202 Mt. Vernon Ave., Ste. 3C
Alexandria, VA 22301
(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
25 W. Chesapeake Ave.,
Ste. 206
Towson, MD 21204
(800) 296-4433
(410) 321-6647
(410) 321-9165 (fax)
??idf@clark.net
http://www.primaryimmune.org
1,2,4,5,6,7,8,9; Spanish materials

IMPERFORATE ANUS
See: Anorectal Malformations

INCLUSION BODY MYOSTISIS
See: Immune Disorders

INCONTINENCE

National Association For
Continence
PO Box 8310
Spartanburg, SC 29305
(800) 252-3337
(864) 579-7900
(864) 579-7902 (fax)
??lloudon@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)
??nipf@pipeline.com
http://imgen.bcm.tmc.edu/nipf
5,6; 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: Peutz-Jeghers Syndrome;
Polyposis

INTESTINAL POLYPOSIS-CUTANEOUS
PIGMENTATION
SYNDROME
See: Peutz-Jeghers Syndrome;
Polyposis

INTESTINAL PSEUDO-OBSTRUCTION
SYNDROME

American Pseudo-Obstruction &
Hirschsprung's Disease Society
158 Pleasant St.
North Andover, MA 01845
(800) 394-2747
(978) 685-4477
(978) 685-4488 (fax)
??aphs@tiac.net
http://www.tiac.net/users/aphs
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: Peutz-Jeghers Syndrome;
Polyposis

JERVELL & LANGE-NIELSEN
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
1,2,3,4,5,6,9

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

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/~cla620
2/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)
??aakpnat@aol.com
http://www.aakp.org
1,2,4,6,7,8

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)
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/Punjabi
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

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@pkfoundation.org
http://wwwpkdcure.org
1,2,5,6,7,8
Spanish/French/German/
Italian/Japanese materials

KIDNEY STONES
See: Cystinuria

KINKY HAIR DISEASE
See: Menkes Disease

KIRGHIZIAN
DERMATOOSTEOLYSIS
See: Ectodermal Dysplasias

KLINEFELTER'S SYNDROME

49 XXXXY Syndrome Association
10001 NE 74th St.
Vancouver, WA 98662-3801
(360) 892-7547
??kimbj@juno.com
1,3

Klinefelter's Syndrome
Association, Inc.
PO Box 119
Roseville, CA 95661-0119
(916) 773-2999
??ks47xxy@ix.netcom.com
http://www.genetic.org
1,2,3,4,5,6,7,9; 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
(612) 925-2596
(612) 925-4708 (fax)
http://www.k-t.org
??jvessey@uswest.net
1,2,3,4,6,9

KLIPPEL-TRENAUNAY-WEBER
SYNDROME
See: Klippel-Trenaunay Syndrome

KRABBE DISEASE
See: Leukodystrophy, Tay-Sachs
Disease

KUFS DISEASE
See: Batten Disease; Tay-Sachs
Disease

KUGELBERG-WELANDER
DISEASE
See: Spinal Muscular Atrophy

KUSSMAUL-LANDRY 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; Language
Disorders

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

Learning Disabilities Association
of Canada
323 Chapel St., Ste. 200
Ottawa, ON CAN K1N 7Z2
(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
27 West 20th St., Ste. 303
New York, NY 10011
(212) 645-6730
(212) 924-8896 (fax)

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

Resource 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 Ferndale St.
Philadelphia, PA 19116
(215) 677-4206
2,3

International Lesch-Nyhan
Disease Registry
Matheny School and Hospital
Institute of Applied Research
PO Box 339
Peapack, NJ 07977
(908) 234-0618
(908) 234-0963 (fax)
??info@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: Patrick Thomson
1110 Finch Ave. W., Ste. 220
Toronto, ON CAN M3J 2T2
(800) 268-2144 (Canada only)
(416) 661-9541
(416) 661-7799 (fax)
??leukemia@istar.ca
http://www.leukemia.ca
1,2,5,6,8

Leukemia & Lymphoma Society
1311 Mamaroneck Ave., 3rd Fl.
White Plains, NY 10605
(800) 955-4572
(212) 573-8484
(212) 450-8844
(212) 856-9686 (fax)
http://www.leukemia.org
1,2,3,4,5,7,8; 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@ceet.niu.edu
http://www.ulf.org
1,2,3,4,6,8; Spanish/French
materials

LEUKODYSTROPHY,
METACHROMATIC
See: Leukodystrophy, Tay-Sachs
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

LIMB-GIRDLE
MUSCULAR DYSTROPHY
See: Muscular Dystrophy

LIMIT DEXTRINOSIS
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 Lissencephally 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) 668-2000 (fax)
??webmail@liverfoundation.org
http://www.liverfoundation.org
1,2,4,5,7,8,9; 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
1,2,3,4,5,8; French materials

LIVER PHOSPHORYLASE
DEFICIENCY
See: Glycogen Storage
Diseases; Muscular Dystrophy

LOBSTEIN DISEASE, TYPE I
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@aros.net
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.lung.usa.org
2,4,5,6,7,8; Spanish materials

Canadian Lung Association
Attn: Deirdre Freiheit
1900 City Park Dr., Ste. 508
Gloucester, ON CAN K1J 1A3
(613) 747-6776
(613) 747-7430 (fax)
??info@lung.ca
http://www.lung.ca
2,4,5,6,7

LUPUS ERYTHEMATOSIS

Lupus Foundation of America
1300 Piccard Dr., Ste. 200
Rockville, MD 20850
(800) 588-0121
(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 M5G1E2
(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)
??inln@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

MACULAR DISEASES
See also: Retinitis Pigmentosa;
Usher Syndrome; Visual
Impairments

Association for Macular Diseases
210 E. 64th St.
New York, 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

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 M5G 2C4
(416) 340-3238
(416) 340-4960 (fax)
??mha@mhassn.com
http://www.mhassn.com
1,2

Malignant Hyperthermia
Association of the 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 L5M 4Z0
(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
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 (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

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: Peutz-Jeghers Syndrome;
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 2Z3
(416) 484-7750
(416) 484-4617 (fax)
??cmhanat@interlog.com
http://www.cmha.ca
1,2; French materials

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,

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
??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

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
??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.
Kinsman 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.roeher.ca
http://www.cacl.ca
1,2,3,4,5,6,7,8,9; 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 (DDNA)
228 Grimes St., Ste. 246
Eugene, OR 97402
(800) 888-6733
(541) 485-7372 (fax)
??ddnahq@aol.com
http://www.ddna.org
1,2,4,5,6,8

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

MERRF SYNDROME
See: Myoclonus;
Mitochondrial Disorders

METABOLIC DISORDERS
See also: Acidemia, Organic;
Galactosemia; Lactic Acidosis;
Maple Syrup Urine Disease;
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) 1270 250221
(44) 1270 259375
(44) 1270 250244 (fax)
??chris.owenroberts@zoom.co.uk
1,2,3,4 (in UK), 5,6,7,8;
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; Tay-Sachs
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 Conneticut 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) 997-4763 (fax)
??resourcecenter@modimes.org
http://www.modimes.org
2,5,7,8

National Institute of Child Health
& Human Development
NICHD Clearinghouse
PO Box 3006
Rockville, MD 20847
(800) 370-2943
(301) 984-1473 (fax)
??NICHDclearinghouse@mail.nih.
gov.
http://www.nichd.nih.gov
2

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
330 7th Ave., #1203
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: Lymphatic Malformations;
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
http://www.umdf.org
1,2,3,4,5,6,7,8

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

Moebius Syndrome Support Group
38883 FoxHolm Dr.
Palmdale, CA 93551
(805) 267-2570 (voice/fax)
??lorit@netport.com
http://www.wincom.net/moebi
us/
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," Tay-Sachs
Disease

MUCOLIPIDOSIS TYPE IV
See also:
Mucopolysaccharidosis; Tay-Sachs
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

MUCOSULFATIDOSIS
See: Hearing Impairments;
Ichthyosis; Leukodystrophy;
Tay-Sachs Disease

MULTIPLE CARBOXYLASE
DEFICIENCY
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
3,9

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 45044
(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
1,2,4,5,7,8

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
2330 N. Meridian St.
Indianapolis, IN 46208-5730
(800) 544-1213
(317) 923-MDFF (6333)
(317) 923-6334 (fax)
??mdff@prodigy.net
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
123 W. Madison, Ste. 800
Chicago, IL 60602
(800) 541-5454
(312) 853-0523 (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 Spinningdale Ct.
Mississauga, ON CAN L5M 3J8
(905) 567-8843
(905) 567-9189 (fax)
??myelin@interlog.com
2,6,7,8,9

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/
1,2,8;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 also: Epilepsy;
Opsoclonus-Myoclonus
Syndrome

Moving Forward
2934 Glenmore Ave.
Kettering, OH 45409
(513) 293-0409
??editormdp@aol.com
http://www.acor.org/diseases/he
matology/mpd
2

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
X-Linked 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

NEUROMETABOLIC
DISORDERS
See: Metabolic Disorders

NEURONAL CEROID
LIPOFUSCINOSES
See: Batten Disease

NEUROPATHY, HEREDITARY,
SENSORY MOTOR
See: Charcot-Marie-Tooth
Disease

NEUROPATHY, PERIPHERAL
See: Charcot-Marie-Tooth
Disease

NEUTROPENIA

Neutropenia Support Assoc., Inc.
PO Box 243
905 Corydon Ave.
Winnipeg, MB CAN R3M 357
(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
Regisry 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.scnir.medicine.washington.edu/
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.
N. 1590 Fairview Ln.
Fort Atkinson, WI 53538
(920) 563-8677
(877) CURE-NPC (287-3672)
(920) 563-5246
??webmaster@nnpdf.org
http://www.nnpdf.org

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: Cardio-Facio-Cutaneous
Syndrome; 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

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

ODONTOONYCHODERMAL
DYSPLASlA
See: Ectodermal Dysplasias

ODONTOONYCHOHYPOHIDRO
TIC DYSPLASlA
See: Ectodermal Dysplasias

ODONTOTRICHODYSPLASIA
WITH NEUTROPENIA
See: Ectodermal Dysplasias;
Neutropenia

ODONTOTRICHOMELIC
SYNDROME
See: Ectodermal Dysplasias

OLDFIELD SYNDROME
See: Peutz-Jeghers Syndrome;
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 515
Grand Lake, CO 80447
(970) 627-8935 (phone/fax)
(970) 627-8818 fax
??opitznet@mac.com
http://www.gle.egsd.k12.co.us/o
pitz/index.htm
1,2,3,6,8,9

OPITZ-BBBG COMPOUND
SYNDROME
See: Opitz Syndrome

OPITZ-FRIAS SYNDROME
See: Opitz Syndrome

OPSOCLONUS-MYOCLONUS
SYNDROME
See also: Epilepsy; 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/hotspri
ngs/spa/2190
3

OPTIC NERVE HYPOPLASlA
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

OSTEOCHONDROMATOSlS
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
1,2,4,5,6,7; 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/can
ada/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 Dysplasias

PAGON SYNDROM
See: Hydrocephalus;
Lissencephaly

PALLISTER-HALL SYNDROME
See also: Anorectal
Malformations; Pituitary
Tumors

Pallister-Hall Foundation
Ross, 8 Heather Dr. #E
White River Junct, VT 05001-9302
(802) 222-9683
??messer@sover.net
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: Leukodystrophy

PEMPHIGUS, FAMILIAL
See: Ichthyosis

PEPCK DEFICIENCY
See: Lactic Acidosis;
Mitochondrial Disorders

PERIPHERAL NEUROPATHY
See: Charcot-Marie-Tooth
Disease

PERONEAL MUSCULAR
ATROPHY
See: Charcol-Marie-Tooth
Disease

PERVASIVE DEVELOPMENTAL
DISORDER (PDD)
See: Autism

PEUTZ-JEGHERS SYNDROME
See also: Polyposis

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.hopkins-coloncer.org
3,9

PEUTZ-TOURAINE SYNDROME
See: Peutz-Jeghers Syndrome;
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 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
1,2,4

PHOSPHOENOLPYRUVATE
CARBOXYKINASE DEFICIENCY
See: Lactic Acidosis;
Mitochondrial Disorders

PHOSPHOFRUCTOKINASE
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
GLYCOGEN STORAGE
See: 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 Tumor Network
Association
16350 Ventura Blvd., Ste. 231
Encino, CA 91436
(805) 499-9973
(805) 499-1523 (fax)
??ptna@pituitary.com
http://www.pituitary.com
1,2,3,4,7,8

Pituitary Tumor Support Network
of Canada
61 Markbrook Ln.
Etiboke, ONT CAN M9V 5E7
(416) 864-5469
1,2,3,4,6,8

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.org
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
DYSPLASIA
See: McCune-Albright
Syndrome

POLYPOSIS
See also: Cancer; Peutz-Jeghers
Syndrome

Familial Gastrointestinal
Cancer Registry
Mount Sinai Hospital
1157-660 University Ave.
Toronto, ON CAN MSG 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;
Tay-Sachs Disease

PORPHYRIA

Metabolic Disorders American
Porphyria Foundation
PO Box 22712
Houston, TX 77227
(713) 266-9617
(713) 871-1788
??porphyrus@juno.com
http://www.enterprise.net/apf
1,2,3,4,7,8,9

Metabolic Disorders Canadian
Porphyria Foundation
Box 1206
Neepawa, MB CAN ROJ 1H0
(204) 476-2800 (voice/fax)
??porphyria@cpf-inc.ca
http://www.epf-inc.ca
1,2; French materials

PORT WINE STAINS
See: Sturge-Weber Sydrome

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
1,2,3,4,5,6,7,8,9; 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) 494-1026 (fax)
??wtbibr@aol.com
3,9

PROGRESSIVE
HYPOERYTHEMIA
See: Anemia, Aplastic

PROGRESSIVE OSSEOUS
HETEROPLASIA
See: Connective Tissue
Disorders; Fibrodysplasis
Ossificans Progressiva

PROPINONYL-COA
CARBOXYLASE (PCC)
See: Deficiency 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

PSEUDO-HURLER
POLYDYSTROPHY
See: Mucopolysaccharidosis;
Tay-Sachs Disease

PSEUDOCHOLINESTERASE
DEFICIENCY
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@npfusa.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
STENOSlS
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/
2,8

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; Deaf-Blind;
Ectodermal Dysplasias;
Hearing Impairments; Visual
Impairments

RASMUSSEN ENCEPHALITIS
See: Rasmussen Syndrome

RASMUSSEN SYNDROME
See also: Epilepsy; Seizure
Disorders

Rasmussen Syndrome and
Hemispherectomoy Support
Network
c/o Al and Lynn Miller
8235 Lethbridge Rd
Millersville, MD 21108
(410) 987-5221 (voice)
[Omega]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 Respiratory
Papillomatosis Foundation
PO Box 6643
Lawrenceville, 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.rpinternational.org
1,2,4,7,8,9; Spanish materials

RP Research Foundation Fighting
Blindness
c/o Sharon Cole or Margot
Alward
36 Toronto St., Ste. 910
Toronto, ON CAN M5C 2CS
(800) 461-3331 (Canada only)
(416) 360-4200
(416) 360-0060 (fax)
1,2,3,5,7,8; French materials

The Foundation Fighting
Blindness
Executive Plaza 1, Ste. 800
11350 McCormick Rd.
Hunt Valley, MD 21031
(888) 665-9010
(410) 785-1414
(410) 785-9687 (local TDD)
(410) 771-9470 (fax)
??Mpalmer@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)
1,3

RETINOCEREBRAL
ANGIOMATOSIS
See: Von Hippel-Lindau
Syndrome

RETINOPATHY OF
PREMATURITY (ROP) DH
See also: Visual Impairments

Prevent Blindness in
Premature Babies
PO Box 44792
Madison, WI 53744-4792
2,3,4,9

RETT SYNDROME

International Rett Syndrome
Association
9121 Piscataway Rd., Ste. 2B
Clinton, MD 20735
(800) 818-7388
(301) 856-3334
(301) 856-3336 (fax)
??irsa@rettsyndrome.org
http://www.rettsyndrome.org
1,2,3,4,6,7,8,9; Spanish/French/
Russian/German materials

Ontario Rett Syndrome
Association
147 Westdale Rd,
Oakville, ON CAN L6L 4Z7
(905) 844-7673
(905) 884-8730 (fax)
??rettsont@cgocable.net
http://www.cgocable.net/
~rettsont
1,2,3,4,5,7,8,9

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-Hirschhom Syndrome

RING CHROMOSOME 6
See: Chromosome 6 Disorders

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
(612) 434-1152
(763) 434-3691 (fax)
??kmkruger@uswest.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)
??baxter@ruraltel.net
http://www.rubenstein-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 Dr.
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)
??scoliosis@aol.com
http://www.scoliosis.org
1,2,5

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
ANHIDROSIS, CONGENITAL
See: Familial Dysautonomia

SEPTO-OPTIC DYSPLASIA
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
IMMUNODEFICIENCY (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
1,2,3,5,6; Spanish materials

SHPRINTZEN SYNDROME
See: Velo-Cardio-Facial
Syndrome

SHWACHMAN SYNDROME
See also: Growth Disorders

Shwachman Diamond
Syndrome, Inc.
c/o Joan Mowery
4118 Quincy St.
St. Louis, MO 63116
(314) 352-1821 (phone/fax)
(314) 461-6106 fax
??jmowery@mvp.net
http://www.shwachman~
diamond.org
1,2,3,4,6,8,9;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
Culver 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
POBox 20964
Greensboro, NC 27420
(800) 733-8297
(336) 274-1507
(336) 275-7984 (fax)
??scdap@aol.com
http://www.greensboro.com
/sickle/
1,2,3,4,7

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 DYSPLASIA
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
Advocacy & Exchange
32 Ivy Ln.
Glen Mills, PA 19342
(610) 485-9663
??bhook@erols.com
http://www.members.aol.com/slo
97/index.htm
1,2,3,6,9

SMITH-MAGENIS SYNDROME

PRISMS: Parents & Researchers
Interested in Smith-Magenis
Syndrome
76 So. New Boston Road
Francestown, NH 03043
(603) 547-8384
(603) 547-3043 (fax)
??cbessette@monad.net
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@well.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 DYSPHONIA
See: Dystonia

SPASMODIC TORTICOLLIS
See: Dystonia

SPASMODIC WRYNECK
See: Dystonia

SPASTIC PARAPLEGIA,
FAMILIAR
See: Ataxia

SPEECH DISORDERS
See: Aphasia; Apraxia;
Stuttering

SPHINGOMYELIN LIPIDOSIS
See: Niemann-Pick Disease

SPIELMEYER-VOGT DISEASE
See: Batten Disease

SPIELMEYER-VOGT-BATTEN
SYNDROME
See: Batten Disease

SPINA BIFIDA
See also: Arnold-Chiari
Malformation; Hydrocephalus;
Incontinence; Latex Allergy

Spina Bifida Association of
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
220-388 Donald St.
Winnipeg, MB CAN R3B 2J4
(800) 565-9488 (Canada only)
(204) 925-3650
(204) 925-3654 (fax)
??spinab@mts.net
http://www.sbhac.ca
1,2,4,5,6,7,8; 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@cvpf.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 (hotline 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
See also: Muscular Dystrophy;
Ventilator Use

Families of SMA
PO Box 196
Libertyville, IL 60048-0196
(800) 886-1762
(847) 367-7620
(847) 367-7623 (fax)
??sma@interaccess.com
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.sticklers.org
??houch@southwind.net
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) 649-9486 (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 SL Ste 1402
Ottawa, ON CAN K1P 5V9
(613) 569-4361
1-888-HSF-INFO (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;
Neurofibramatosis; 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)
??swf@sturge-weber.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/~cvs05
90
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)
??stuttersfa@aol.com
http://www.stuttersfa.org
2,4,5: 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 1P2
(800) 363-7437(Canada Only)
(416) 488-3260
(416) 488-3864 (fax)
??sidsinfo@sidscanada.org
http://www.sidscanada.org/sids
1,2,3,4,5,6,8,9; French/Spanish
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
2001 Beacon St., Ste 204
Boston, MA O2135
(800) 90-NTSAD (68723)
(617) 277-4463
(617) 277-0134 (fax)
??ntsad-boston@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
96 Mack St.
Kingston, ON CAN K7L 1N9
(613) 544-8364
(613) 544-9731 (fax)
??thyroid@kos.net
http://www.home.ican.net/~!thyr
oid.Canada.html
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
1,2,3,4,5,6,7,8,9; school inservicing
program; print material in
French and English:; kids' programs

TOXIC PARALYTIC ANEMIA
See: Anemia, Aplastic

TOXOCARIASIS

National Toxicariasis Foundation
Project Mustard Seed
PO Box 512
Edwardsville, IL 62025
(618) 659-1212
??lmsjursen@hotmail.com
1,2,3,4,5,6,7,8,9

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
1,2,3,4,6

TREMOR

International Tremor Foundation
7046 W 105th St.
Overland Park, KS 66212-1803
(888) 387-3667
(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

TRICHONYCHODYSPLASIA
WITH XERODERMA
See: Ectodermal Dysplasias

TRICHOOCULODERMOVERTEB
RAL SYNDROME
See: Ectodermal Dysplasias

TRICHOODONTOONYCHIAL
DYSPLASIA
See: Ectodermal Dysplasias

TRICHOODONTOONYCHO-HYPOHIDROTIC
DYSPLASIA
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

National Tuberous Sclerosis
Association
8181 Professional Pl., Ste. 110
Landover, MD 20785-2226
(800) 225-6872
(301) 459-9888
(301) 459-0394 (fax)
??ntsa@ntsa.org
http://www.ntsa.org
1,2,3,4,9; 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)
??jillian.dasilva@ablelink.org
http://www.sky.net/~adamse/tub
erous.htm
1,2,3,4,7,8,9

TURCOT SYNDROME
See: Brain Tumors; 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
1,2,3,5,6,9; Spanish materials

TWIN-RELATED DISEASES

Conjoined Twins International
PO Box 10895
Prescott, AZ 86304-0895
??dwdegeraty@excelonline.com

Twin Hope
2592 West 14th St.
Cleveland, OH 44113
(216) 687-2544
??twinhope@twinhope.com
http://www.twinhope.com
1,2,3,4,5,7,8,9; 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,
TROSYLURIA
See also: Kidney Disorders/
Liver Disorders

Groupe Aide aux Enfants
Tyrosinemiques du Quebec
162 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's Disease

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: Ostomy

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 Terri 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; Lymphatic
Malformations; Moyamoya
Disease; 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
1,2,3,5,9; 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
1,2,3,4,6,7,9

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
1,2,3,4,5 Spanish materials

VISUAL IMPAIRMENT/
HEARING IMPAIRMENT
See: Deaf-Blind

VISUAL IMPAIRMENTS
See also: Albinism; Glaucoma;
Macular Diseases; Retinitis
Pigmentosa; Retinoblastoma;
Retinopathy of Prematurity;
Septo-Optic Dysplasia; 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.o
rg
1,2,3,4,8; Spanish materials

Blind Children's Fund
4740 Okemos Rd.
Okemos, MI 48864
(517) 347-1357
(517) 347-1459 (fax)
[Omega]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@braileinstitute.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 (TTY)
(416) 480-7699 (fax)
??marjerb@east.cnib.ca
http://www.cnib.ca
1,2,3,4,5,7,8; 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
Executive Plaza I, Ste. 800
11350 McCormick Rd.
Hunt Valley, MD 21031-1014
(800) 683-5551
(800) 683-5551 (TDD)
(410) 785-9687 (local TDD)
(410) 771-9470 (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 (TTY)
(212) 821-9705 (fax)
??mbeck@lighthouse.org
http://www.lighthouse.org
1,2,4,5,7; 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
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
2

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)
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)
[Omega]74777.100@compuserve.com
http://www.prevent_blindness.org
1,2,5,6,7,8; 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 Fl., 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 Hippel-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
DISUSE
See: Neurofibromatosis

VON WILLEBRAND DISEASE
See: Hemophilia

VROLIK DISEASE, TYPE II
See: Osteogenesis Imperfecta

WAGR SYNDROME
See also: Aniridia and Wilm's
Tumor

The WAGR Network
c/o Kelly Trout
3456 Brandon Drive
Valdosta, GA 31605
(229) 244-7945
??2fish@surfsouth.com
http://www.wagr.org

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
Support Group, Inc (International)
PO Box 28660
Kansas City, MO 64188-8660
(800) 277-9474
(816) 436-8211 (fax)
??wgsg@wgsg.org
http://www.wgsg.org
1,2,3,4,5,6; 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)
??tmokaba@aol.com
http://www.williams-syndrome.org
1,2,3,4,5,6,8 DNA research bank,
annual music camp

WILLIAMS-BEUREN
SYNDROME
See: Williams Syndrome

WILM'S TUMOR
See: WAGR Syndrome,
Ambiguous Genitalia

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

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/Ibent503
/whs
1,2,3,6,9

Wolf-Hirschhorn Syndrome
Support Group and Newsletter
c/o Brenda Grimmett
5536 Virginia Ct.
Amherst, OH 44001
(440) 282-1460
(440) 989-2005 (fax)
??bgrimmett@eriecoast.com
http://members.aol.com/Ibent503
/whs
1,2,3,4,6,9

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)
http://www.cord.ca
1,4,5,6

Easter Seals Society
1185 Eglington Ave., Ste. 800
North York, ON CAN M3C 3C6
(416) 421-8377
(416) 696-1035 (fax)
??info@easterseats.org
http://www.easterseals.org

XP Society
PO Box 4759
Poughkeepsie, NY 12602
(518) 851-2612 (phone/fax)
http://www.xps.org

XERODERMA-TALIPES-ENAMEL
DEFECT
See: Ectodermal Dysplasias

ZANIER-ROUBICEK SYNDROME
See: Ectodermal Dysplasias

ZELLWEGER SYNDROME
See: Leukodystrophy

ZIEHEN-OPPENHEIM DISEASE
See: Dystonia

Birth Defect Research for
Children
930 Woodcock Rd., Ste. 225
Orlando, FL 32803
(407) 245-7035
(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) 345-3948 (fax)
(403) 345-4544
??office@cord.ca
http://www.cord.ca
1,2,3,4

Easter Seal Society
1185 Eglinton Ave. E, Ste. 706
North York, ON CAN M3C-3C6
(416) 421-8377
(416) 696-1035 (fax)
??info@easterseals.org
http://www.easterseals.org
1,4,5,6,7,8

MUMS Mothers United for
Moral Support
c/o Julie Gordon
150 Custer Ct.
Green Bay, WI 54301-1243
(920) 336-5333
(920) 339-0995 (fax)
??mums@netnet.net
http://www.netnet.net/mums/
1,2,3,4,5,9

National Organization for Rare
Disorders (NORD)
100 Rt. 37, PO Box 8923
New Fairfield, CT 06812-8923
(800) 999-6673
(203) 746-6518
(203) 746-6927 (TDD)
(203) 746-6481 (fax)
??orphan@rarediseases.org
http://www.rarediseases.org

NPPSIS
National Parent to Parent Support
and Information Service
PO Box 907
Blue Ridge, GA 30513
(800) 651-1151
(828) 494-5415
(828) 494-5414 (fax)
http://www.nppsis.org
??nppsis@elijay.com

Parent-to-Parent Link Program
The Easter Seal Society, Ontario
1185 Eglington Ave., Ste. 800
North York, ON CAN M3C 3C6
(416) 421-8377
(416) 696-1035 (fax)
http://www.easterseals.org
??info@easterseals.org

Research Trust for Metabolic
Diseases in Children (RTMDC)
Golden Gates Lodge
Weston Rd., Crewe
Cheshire, England CW2 5XN UK
(44) 1270 250221
(44) 1270 250244 (fax)
http://www.medhlp.netusa.net/a
gsg/agsg1183/htm

OTHER RESOURCES
Search & Respond
c/o Exceptional Parent Magazine
555 Kinderkamack Rd.
Oradell, NJ 07649-1517
(800) 372-7368 (Toll-free in US)
(201) 634-6550
(201) 634-6570 (fax)
??epedit@aol.com
http://www.eparent.com
Exceptional Parent magazine
accepts letters from parents
and professionals searching for
information, networking, or
advice from others on a
disability or related problem.
Some are selected for
publication in our monthly
Search column. Anyone
offering a suggestion may
write a Respond letter, which
will be forwarded and may
also be published.


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 timezone differences when making any calls, particularly international ones. (Unless otherwise noted, telephone numbers are for voice only.)

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
COPYRIGHT 2001 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 2001 Gale, Cengage Learning. All rights reserved.

 
Article Details
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Publication:The Exceptional Parent
Article Type:Directory
Date:Jan 1, 2001
Words:23420
Previous Article:On Boots n' Saddles and Resource Guides.
Next Article:PARENT TO PARENT PROGRAMS.
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