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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 about 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). 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), and 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 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 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, available for $45.00 including S&H from the EP Library as Item Number DP13110D).

USING THIS DIRECTORY

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

See: Adrenal Disorders

45, X SYNDROME

See: Turner's Syndrome;
Albinism & Hypopigmentation

47,XYY; 47,XXY; 47,XXX
SYNDROMES

See: Klinefelter Syndrome

A-BETA-LIPOPROTEINEMIA

See: Tay-Sachs Disease

ABDOMINAL MIGRAINE

See: Cyclic Vomiting Syndrome

ACHONDROPLASIA

See: Growth Disorders

ACID MALTASE DEFICIENCY

See also: Glycogen Storage
Diseases; Pompe Disease

(AMDA) Acid Maltase
Deficiency Association
PO Box 700248
San Antonio, TX 78270-0248
(210) 494-6144
(210) 490-7161 (fax)
* tianrama@aol.com
http://www.amda-pompe.org
1,2,6,8,9

ACIDEMIA, ISOVALERIC (IVA)

See: Acidemia, Organic

ACIDEMIA, METHYLMALONIC

See: Acidemia, Organic

ACIDEMIA, ORGANIC

See also: Fatty Oxidation
Disorders; Maple Syrup Urine
Disease; Metabolic Disorders

Organic Acidemia Association
13210 35th Ave. N.
Plymouth, MN 55441
(763) 559-1797
(763) 694-0017 (fax)
* oaanews@aol.com
http://www.oaanews.org
1,2,3,6,7,8

ACIDEMIA, PROPIONIC

See: Acidemia, Organic

ACOUSTIC NEUROMA

See also: Balance Disorders &
Dizziness; Brain Tumors;
Hearing Impairments;
Neurofibromatosis; Vestibular
Disorders

Acoustic Neuroma Association
600 Peachtree Pkwy, Ste. 108
Cumming, GA 30041
(770) 205-8211
(770) 205-0239 (fax)
* anausa@aol.com
http://www.anausa.org
1,2,4,5,6

Acoustic Neuroma Association
of Canada
PO Box 369
Edmonton, AB
CAN T5J 2J6
(800) 561-2622 (Canada only)
(780) 928-3384(voice/TDD)
* anac@compusmart.ab.ca
http://www.anac.ca
1,2,3,5,6 French materials

ACQUIRED IMMUNE
DEFICIENCY SYNDROME

See: AIDS

ACROCEPHALOSYNDACTYLY,
TYPE I

See: Apert Syndrome

ACROFACIAL DYSOSTOSIS,
NAGER TYPE

See: Nager & Miller Syndromes

ACROMEGALY

See: Multiple Endocrine
Neoplasia I; Pituitary
Disorders/Tumors

ACTH DEFICIENCY

See: Adrenal Disorders

ACYL-COA DEHYDROGENASE
DEFICIENCY, MEDIUM-CHAIN

See: Fatty Oxidation Disorder

ADDISON DISEASE

See: Adrenal Disorders

ADIPOGENITAL-RETINITIS
PIGMENTOSA-POLYDACTYLY
SYNDROME

See: Laurence-Moon-Bardet-Biedl
Syndrome

ADRENAL CORTEX MALE
PSEUDOHERMAPHRODITISM

See: Adrenal Disorders

ADRENAL DISORDERS

National Adrenal Diseases
Foundation
505 Northern Blvd.
Great Neck, NY 11021
(516) 487-4992
* NADFMAIL@aol.com
http://medhelp.org/www/nadf
1,2,3,4,5

ADRENOCORTICOTROPIC
HORMONE DEFICIENCY

See: Adrenal Disorders;
Pituitary Disorders/Tumors

ADRENOGENITAL SYNDROME

See: Adrenal Disorders

ADRENOLEUKODYSTROPHY
See: Leukodystrophy; Tay-Sachs
Disease

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
1,2,3,6,9

AGYRIA

See: Lissencephaly

AICARDI SYNDROME

See also: Agenesis of the
Corpus Callosum; Epilepsy;
Visual Impairments

Aicardi Syndrome Awareness and
Support Group/Network
29 Delavan Ave.
Toronto, ON
CAN M5P 1T2
(416) 481-4095
* asasn@sympatico.ca
2,3,4,7,9

Aicardi Syndrome Newsletter, Inc.
Denise Park Parsons
Editor, Trustee
1510 Polo Fields Ct.
Louisville, KY 40245
(502) 244-9152
* AICNews@aol.com
http://www.Aicardi.com
1,2,6

AIDS

See also: HIV/AIDS;
Curriculum and Materials
Development for HIV Disease;
Healthcare Provider Training
and Technical Assistance.

CDC National STD and AIDS
Hotlines
Tanya Montoya, Information
Coordinator
PO Box 13827
Research Triangle Park,
NC 27709
(800) 344-7432
(800) 227-8922
(800) 342-2437
(800) 344-7432 (Spanish)
(800) 243-7889 (TDD)
(919) 361-4855 (fax)
* hivnet@ashastd.org
http://www.ashastd.org
http://www.iwannaknow.org
2,4

National Pediatric & Family HIV
Resource Center
Estella Ortega, PC Applications
Specialist
PO Box 1709
Newark, NJ 07101-1709
(973) 972-0410
(973) 972-0399 (fax)
* ortegaes@umdnj.edu
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
1,2,3,4,6

ALANINURIA

See: Lactic Acidosis; Acidemia,
Organic

ALBINISM &
HYPOPIGMENTATION

See also: Visual Impairments

NOAH (National Organization for
Albinism and Hypopigmentation)
Michael McGowan President
PO Box 959
E. Hampstead, NH 03826-0959
(800) 473-2310
(603) 887-6049 (phone/fax)
* info@albinism.org
http://www.albinism.org/
2 Spanish materials

ALBINISM

See: Albinism &
Hypopigmentation

ALBINISM OCULAR

See: Albinism &
Hypopigmentation

ALBINISM OCULOCUTANEOUS

See: Albinism &
Hypopigmentation

ALBRIGHT SYNDROME

See: Growth Disorders

ALGONEURODYSTROPHY

See: Reflex Sympathetic
Dystrophy Syndrome

ALL 4P- P+ SYNDROME

See: Chromosome 4p

ALL 4Q- Q+ RING 4
CHROMOSOME

See: Chromosome 4p

ALLERGY

See: Asthma & Allergy; Food
Allergy; Latex Allergy

ALLERGY, FOOD

See: Food Allergy

ALLERGY, LATEX

See: Latex Allergy

ALOPECIA AREATA NATIONAL

National Alopecia Areata
Foundation
PO Box 150760
San Rafael, CA 94915-0760
(415) 472-3780
(415) 472-3780
* info@naaf.org
http://www.naaf.org
1,2,3,4,5,6,7,8,9 Spanish
materials

ALOPECIA UNIVERSALAONYCHODYSTROPHY-TOTAL
VITILIGO

See: Ectodermal Dysplasias;
Vitiligo

ALOPECIA-ANOSMIADEAFNESS-HYPOGONADISM

See: Ectodermal Dysplasias

ALOPECIAONYCHODYSPLASIA-HYPOHIDROSIS

See: Ectodermal Dysplasias

ALPHA-1-ANTITRYPSIN (AAT)
DEFICIENCY

See also: Liver Disorders; Lung
Diseases

Alpha-1 Antitrypsis Deficiency
National Association
8120 Penn Ave. S Ste. 549
Minneapolis, MN 55431
(800) 521-3025
(952) 703-9975
(952) 703-9977 (fax)
* info@alpha1.org
http://www.alpha1.org
1,2,3,4,5,6,7,9

ALPHA-GALACYOSIDASE
DEFICIENCY

See: Fabry Disease

ALPHA THALASSEMIA
MENTAL RETARDATION
SYNDROME, X-LINKED

Alpha Thalassemia Mental
Retardation Syndrome (ATR-X)
Support Group
http://www.groups.yahoo.com/
group/atr-x
c/o International Rare Disease
Support Network (IRDSN)
David Hughes,
President/Founder
3604 Hendvick Dr,
Plano, TX 75074
(972) 423-6117
* Hughes.family@attbi.com
http://www.raredisorders.com

ALPORT SYNDROME

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

ALSTROM SYNDROME

See: Diabetes Mellitus; Hearing
Impairments; Kidney Disorders;
Retinitis Pigmentosa; Visual
Impairments

ALTERNATING HEMIPLEGIA

See: Hemiplegia, Alternating

AMELOCEREBROHYPHOHIDROTIC
SYNDROME

See: Ectodermal Dysplasias

AMELOONYCHOHYPHOHIDROTIC
DYSPLASIA

See: Ectodermal Dysplasias

AMNIOTIC BANDS

See: Craniofacial Disorders

AMPUTATION

See also: Limb Disorders

American Amputee Foundation
PO Box 250218
Little Rock, AR 72225
(501) 666-2523
(501) 666-8367 (fax)
2,3,4,5,7,9

Amputee Coalition of America
900 E. Hill Ave., Ste. 285
Knoxville, TN 37915-2568
(888) AMP-KNOW (267-5669)
(865) 524-8772
(865) 525-7917 (fax)
* acainfo@amputeecoalition.org
http://www.amputeecoalition.org
1 (newsletter for support grp.
leaders),2,3,5 (nat'l support
groups),6,7 Spanish materials

National Amputation Foundation
38-40 Church St.
Malvern, NY 11565
(516) 887-3600
(516) 887-3667 (fax)
* amps76@aol.com
http://www.nationalamputation.
org
1,2,3,4,7,9

AMSTERDAM DWARF
SYNDROME OF DE LANGE

See: Cornelia de Lange
Syndrome

AMYLO-1, 6-GLUCOSIDASE
DEFICIENCY

See: Glycogen Storage
Diseases; Muscular Dystrophy

AMYLOPECTINOSIS

See: Glycogen Storage
Diseases

AMYOPLASIA, CONGENITA

See: Arthrogryposis Multiplex
Congenita

ANAL ATRESIA

See: Anorectal Malformations

ANAL STENOSIS

See: Anorectal Malformations

ANDERSEN DISEASE

See: Glycogen Storage
Diseases

ANDERSON-FABRY DISEASE

See: Fabry Disease

ANDERSON-WARBURG
SYNDROME

See: Norrie Disease

ANEMIA, APLASTIC

See: Anemia, Fanconi; Bone
Marrow Transplant

Aplastic Anemia and
hyelodysplasia Association of
Canada
22 Aikenhead Rd.
Etobicoke, ON
CAN M9R 273
(416) 235-0468
(519) 235-1756 (fax)
http://www.aplastic.ualberta.ca
1,2,4,7,8,9

Aplastic Anemia MDS
International Foundation, Inc.
PO Box 613
Annapolis, MD 21404-0613
(800) 747-2820
(410) 867-0240 (fax)
* aamdsoffice@aol.com
http://www.aamds.org
1,2,3,5,6,8,9

ANEMIA, AREGENERATIVE

See: Anemia, Aplastic

ANEMIA, COOLEY

See: Cooley Anemia

ANEMIA, DIAMOND
BLACKFAN

See also: Anemia Aplastic:
Anemia, Fanconi, Autoimmune
Disorders

Diamond Blackfan Anemia
Registry
1 Gustave Levy Pl.
Box 1208
New York, NY 10029
(212) 241-6031
(212) 360-6921 (fax)

ANEMIA, ERYTHROBLASTOTIC

See: Cooley Anemia

ANEMIA, FANCONI

See also: Anemia, Aplastic;
Heart Disorders; Kidney
Disorders; Leukemia

Fanconi Anemia Research
Fund/Support Group
1801 Willamette St, Ste 200
Eugene, OR 97401
(800) 828-4891 (family support
only)
(541) 687-4658
(541) 687-0548 (fax)
* info@fanconi.org
http://www.fanconi.org
1,2,3,4,5,6,7,8,9 Spanish/
Portugese/French materials

ANEMIA, HEMOLYTIC

See: Cooley Anemia

ANEMIA, HYPOPLASTIC

See: Anemia, Aplastic

ANEMIA, MEDITERRANEAN

See: Cooley Anemia

ANEMIA, REFRACTORY

See: Anemia, Aplastic

ANEMIA, TARGET CELL

See: Cooley Anemia

ANEMIA, TOXIC PARALYTIC

See: Anemia, Aplastic

ANGELMAN SYNDROME

See also: Epilepsy

Angelman Syndrome Foundation
414 Plaza Dr., Ste. 209
Westmont, IL 60559-5507
(800) 432-6435
(630) 734-9267
(630) 655-0391 (fax)
* info@angelman.org
http://www.angelman.org
1,2,3,4,5,6,7,8,9; Internet mail
list-subscribe by sending e-mail
to: listserv@ucsd.edu

Canadian Angelman
Syndrome Society
PO Box 37
Priddis, AB
CAN, T0L 1WO
(403) 931-2415
(403) 931-4237 (fax)
* cass@cadvision.com
http://www.angelmancanada.
org
1,6

ANGIO-OSTEOHYPERTROPHY
SYNDROME

See: Klippel-Trenaunay
Syndrome

ANGIOKERATOMA CORPORIS
DIFFUSUM

See: Fabry Disease

ANGIOMATOSIS RETINA

See: Von Hippel-Lindau
Syndrome

ANIRIDIA

See also: Visual Impairments,
WAGR Syndrome

Anradia Network
PO Box 6444
Colchester C04 3XU
UK
(+44) 0777989624
* hannah@aniridia.org
http://www.aniridia.org

ANKYLOSING SPONDYLITIS,
JUVENILE

See: Arthritis

ANOPHTHALMA

See also: Visual Impairments

International Children's
Anophthalmia Network
5501 Old York Rd.
Philadelphia, PA 19141
(800) 580-4226
(215) 456-2356 (fax)
1,2,3,4,6,9

ANORECTAL MALFORMATIONS

See also: Intestinal Pseudo-Obstruction
Syndrome

Pull-Thru Network
2312 Savoy St.
Hoover, AL 35226
(205) 978-2930
(203) 221-9212
* info@pullthru/.org
http://www.pullthrough.org
1,2,3,4,9

ANOREXIA NERVOSA

Includes bulimia nervosa and
binge-eating disorder

American Anorexia Bulimia
Association, Inc.
165 W 46th St Ste 1108
New York, NY 10036
(212) 575-6200
2,3,4,5

National Association of Anorexia
Nervosa and Related Disorders
PO Box 7
Highland Park, IL 60035
(847) 831-3438
(847) 433-4632 (fax)
* anad20@aol.com
* AnadAdvocacy@aol.com
http://www.anad.org
2,3,4,5,6,7

APECED SYNDROME

See: Ectodermal Dysplasia;
Hypoparathyroidism

APERT SYNDROME

See also: Craniofacial
Disorders

Apert Syndrome Pen Pal Network
PO Box 115
Providence, RI 02901
(401) 454-4849
2,3,

APHASIA, ACQUIRED

See also: Brain Injury; Stroke

National Aphasia Association
Penny Montgomery-West,
Response Center Director
29 John St., #1103
New York, NY 10038
(800) 922-4622
(212) 267-2812 (fax)
* naa@aphasia.org
http://www.aphasia.org
1,2,5,6

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) 293-3150
(202) 293-3656 (fax)
* asaa@sleepapnea.org
http://sleepapnea.org
1,2,4

APRAXIA

See also: Learning Disabilities

C.H.E.R.A.B. Foundation, Inc.
(Communication Help, Education,
Research, Apraxia Base Foundation)
Lisa Geng, President
PO Box 8524.
PSL, Florida 34952-8524
(772) 335-5135
* help@cherab.org
http://www.apraxia.cc/

The Childhood Apraxia of
Speech Association
123 Eisele Rd.
Cheswick, PA 15024
(412) 767-6589
(412) 767-0534 (fax)
* helpdesk@apraxia.org
http://www.apraxia.org
1,2,4,7

AQUEDUCTAL STEN0SlS

See: Hydrocephalus

ARACHNODACTLY

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
PO Box 7669
Atlanta, GA 30357
(800) 283-7800
(404) 872-7100
(404) 872-9559 (fax)
http://www.arthritis.org
1,2,3,4,5,6,7,8 Spanish
materials

Arthritis Society

393 University Ave., Ste. 1700
Toronto, ON
CAN M5G 1E6
(800) 321-1433(Canada only)
(416) 979-7228
(416) 979-8366 (fax)
* nkent@arthritis.ca
http://www.arthritis.ca
2,5,7,6 French materials

National Institute of Arthritis and
Musculoskeletal and Skin
Diseases Information
Clearinghouse (NIAMS)
1 AMS Circle
Bethesda, MD 20892-3675
(301) 495-4484
(877) 22-NIAMS (226-4267)
(toll free)
(301) 565-2966 (TDD)
(301) 718-6366 (fax)
http://www.nih.gov/niams/
2,4

ARTHROCHALASIS MULTIPLEX
CONGENITA

See: Ehlers-Danlos Syndrome

ARTHROGRYPOSIS MULTIPLEX
CONGENITA

See also: Growth Disorders;
Muscular Dystrophy

AVENUES: A National Support
Group for Arthrogryposis
Multiplex Congenita
PO Box 5192
Sonora, CA 95370
(209) 928-3688
* avenues@sonnet.com
http://www.sonnet.com/avenues
1,2,3

ASCENDING PARAYLSIS

See: Guillain-Barre Syndrome

ASPERGER'S DISORDER

See: Autism

ASPERGER SYNDROME

See: Autism

ASTHMA

See: Asthma & Allergy

ASTHMA & ALLERGY

See also: Food Allergy; Latex
Allergy,' Lung Diseases

Allergy & Asthma Network
Mothers of Asthmatics
2751 Prosperity Ave., Ste.150
Fairfax, VA 22031-4397
(800) 878-4403
(703) 641-9595
(703) 573-7794 (fax)
* info@aanma.org
http://www.aanma.org
1,2,3,4,7

Asthma and Allergy Foundation
of America
1233 20th St., NW, Ste. 402
Washington, DC 20036
(800) 727-8462
(202) 466-7643
(202) 466-8940 (fax)
* info@aafa.org
http://www.aafa.org
1,2,3,4,5,6,7,6 Spanish
materials

Asthma Society of Canada
130 Bridgeland Ave., Ste. 425
Toronto, ON
CAN M6A 1Z4
(800) 787-3880
(416) 787-4050
(416) 787-5807 (fax)
* info@asthma.ca
http://www.asthma.ca
1,2,6 patient education

ATAXIA

See also: Friedreich Ataxia

National Ataxia Foundation
2600 Fernbrook Ln., Ste. 119
Minneapolis, MN 55447-4752
(763) 553-0020
(763) 553-0167 (fax)
* naf@mr.net
http://www.ataxia.org
1,2,3,4,5,6,8

ATAXIA, FAMILIAL

See: Ataxia; Friedreich Ataxia

ATAXIA, FRIEDREICH

See: Ataxia; Friedreich Ataxia

ATAXIA, SPINOCEREBELLAR

See: Ataxia; Friedreich Ataxia

ATAXIA, TELANGIECTASIA

See also: Ataxia; Autoimmune
Disorders; Cancer; Immune
Disorders; Leukemia

Ataxia Telangiectasia
Children's Project
668 South Military Trail
Deerfield Beach, FL 33442
(800) 543-5728
(954) 481-6611
(954) 725-1153 (fax)
* info@atcp.org
http://www.atcp.org
1,2,3,4,6,8,9 Spanish materials

ATAXIA WITH LACTIC ACIDOSIS II

See: Ataxia; Lactic Acidosis;
Mitochondrial Disorders

ATRESIA

See: Microtia

ATRIAL SEPTAL DEFECTS

See: Heart Disorders

ATROPHIA BULBORUM
HEREDITARIA

See: Norrie Disease

ATTENTION DEFICIT DISORDER

The ADHD Challenge
PO Box 488
West Peabody, MA 01985-7277
(800) 233-2322
1,2,4

Learning Disabilities
AD-IN: Attention Deficit
Information Network
58 Prince St.
Needham, MA 02492
(781) 455-9895
(781) 444-5466 (fax)
* adin@gis.net
http://www.addinfonetwork.org
2,3,4,5,6,9

CHADD-Canada, Inc.-Children
and Adults with Attention Deficit
Disorder
1376 Bank St.
Ottawa ON,
CAN K1H 1B3
(613) 731-1209
(613) 257-1563 (fax)
* chaddcanad@hotmail.com
http://www.chadd.org
http://wwwmembers, tripod.co
m/~chaddcanada/index.html
1,2,3,5,6,9 Spanish materials

CHADD: Children and Adults
with Attention Deficit
Hyperactivity Disorders
8181 Professional Pl., Ste. 201
Landover, MD 20785
(800) 233-4050
(301) 306-7070
(301) 306-7090 (fax)
* national@chadd.org
http://www.chadd.org
1,2,3,5,6,7,9 Spanish materials

National ADD Association
1788 2nd St., Ste. 200
Highland Pk, IL 60035
(847) 432-ADDA (2332)
* mail@add.org
http://www.add.org
1,2,4,6

ATTENUATED ADENOMATOUS
POLYPOSIS COLI

See: Hereditary Colon Cancer

AUDITORY NEUROPATHY

See: Kernicterus

AURICULO-OCULO-VERTEBRAL
SYNDROME

See: Goldenhar Syndrome

AUTISM

See also: Autism and Sensory
Impairments; Purine Metabolic
Disorders; Mental Retardation;
Asperger Syndrome; PDD Fetal
Alcohol Syndrome/Effect;
Heart Disorders

Asperger Syndrome Coalition of
the United States
PO Box 351268
Jacksonville, FL 32235-1268
(904) 745-6741
(866) 4-ASPRGR (427-7747)
* info@asc-us.org
http://www.asperger.org
2,3

Autism Independent UK
199/201 Blanford Ave.
Kettering, Northants NN16 9AT
United Kingdom
01536 523274 (phone/fax)
* autism@rmplc.co.uk
http://www.autismuk.com

Autism National Committee
PO Box 6175
N. Plymouth, MA 02362-6175
(781) 648-1813 (phone/fax)
http://www.autcom.org
1,2,6,7

Autism Research Institute
Mallie Odle, Assistant
to Director
4182 Adams Ave.
San Diego, CA 92116
(619) 281-7165
(619) 563-6840 (fax)
1,2,4,9

Autism Resources
Chapel Hill TEACH Center
100 Renee Lynn Ct.
Carrboro, NC 27510
(919) 966-5156
http ://www.unc.edu/~cory/
autism-info
2,3,4,7,9

Autism Society of America
7910 Woodmont Ave.,
Ste 300
Bethesda, MD 20814-3067
(800) 3AUTISM (328-8476)
(301) 657-0869 (fax)
http://www.autism-society.org/
5,7,9

Autism Society of Canada
129 Yorkville Ave., #202
Toronto, ON
CAN M5R 1C4
(416) 922-0302
(416) 922-1032 (fax)
1,2,4,7 French materials

Center for Study of Autism
PO Box 4538
Salem, OR 97302
(503) 363-9110 (voice/fax)
* sait@teleport.com
http://www.autism.org
2,6

MAAP Services, Inc.
PO Box 524
Crown Point, IN 46308
(219) 662-1311
(219) 662-0638 (fax)
* chart@netnitco.net
http://www.maapservices.org
1,2,5,6

National Autism Hotline/Autism
Services Center
605 Ninth St., Prichard Bldg.
PO Box 507
Huntington, WV 25710-0507
(304) 525-8014
(304) 525-8026 (fax)
2,3,5,7 Spanish/Italian/French
material

The New Jersey Center for
Outreach and Services for the
Autism Community Inc. (COSAC)
Rebecca Hernadez, Director
of Communications
1450 Parkside Ave., Ste. 22
Ewing, NJ 08638
(609) 883-8100
(609) 883-5509 (fax)
* information@njcosac.org
http://www.njcosac.org
2,7

AUTISM AND SENSORY
IMPAIRMENTS
See also: Hearing Impairments;
Visual Impairments

Autism Network for Hearing and
Visually Impaired Persons
c/o Dolores and Alan Bartel
7510 Oceanfront Ave.
Virginia Beach, VA 23451
(757) 428-9036
(757) 428-0019 (fax)
2,6

CAN (Cure Autism Now)
5455 Wilshire Blvd., Ste. 715
Los Angeles, CA 90036
(888) 8-AUTISM (288476)
(323) 549-0500
(323) 549-0547 (fax)
* info@cureautismnow.org
http://www.canfoundation.org

Indiana Resource Center for
Autism (IRCA)
Indiana Institute on Disability
and Community at Indiana
University-Bloomington
2853 E. Tenth St.
Bloomington, IN 47408-2696
(812) 855-6508
(812) 855-9396 (TDD)
(812) 855-9630 (fax)
* prattc@indiana.edu
http://www.isdd.indiana.
edu/~irca
1,2,4,6

The National Alliance for Autism
Research
99 Wall St., Research Park
Princeton, NJ 08540
(888) 777-NAAR (5227)
(609) 430-9160
(609) 430-9163 (fax)
* naar@naar.org
http://www.naar.org
1,2,8

On-line Asperger's Syndrome
Information and Support (OASIS)
* bkirby@udel.edu
http://www.udel.edu/bkirby/
asperger
2,3

TEACCH
310 Medical School Wing E
University of North Carolina/CB
#7180
Chapel Hill, NC 27599-7180
(919) 966-2174
(919) 966-4127 (fax)
* teacch@unc.edu
http://www.teacch.com
2,4,5,6,9

Yale Program for Autism, Prader-Willi
Syndrome, and Williams
Syndrome
Yale Child Study Center
230 S. Frontage Rd.
PO Box 207900
New Haven, CT 06520-7900
(203) 785-7923
(203) 785-7611 (fax)
* devdis.clinic@yale.edu
http://info.med.yale.edu/chldstdy.
wspws
2,4

AUTOIMMUNE DISORDERS

See also: Immune Disorders;
Vitiligo

American Autoimmune Related
Diseases Association
22100 Gratiot Ave.
East Detroit, MI 48021
(800) 598-4668
(586) 776-3900
(586) 776-3903 (fax)
* aarda@aol.com
http://www.aarda.org
1,2,4,5 (Local Contacts),6,7,8

AUTOIMMUNE MYOCARDITIS

See: Autoimmune Disorders

AUTOIMMUNE RHEUMATIC
DISEASES

See: Scleroderma

B12 METABOLISM, INBORN
ERROR OF

See: Cobalamin (B12)
Defiency

BAISCH SYNDROME

See: Ectodermal Dysplasias

BALANCE DISORDERS &
DIZZINESS

See also: Vestibular Disorders

EAR Foundation
1817 Patterson St.
Nashville, TN 37203-2110
(800) 545-4327 (voice/TDD)
(615) 329-7807
(615) 329-7935 (fax)
* ear@earfoundation.org
http://www.earfoundation.org
1,2

BANNAYAN, RUVALCABA,
RILEY-SMITH SYNDROME

See: Sotos Syndrome

BARDET-BIEDL SYNDROME

See: Laurence-Moon-Bardet-Biedl
Syndrome

BARTH SYNDROME

See also: Heart Disorders;
Neutropenia; Short Stature

The Barth Syndrome
Foundation, Inc.
PO Box 974
Perry, FL 32348
(850) 223-1128
(402) 421-1926
* postmaster@barthsyndrome.org/
http://www.barthsyndrome.org

BATTEN DISEASE

Batten Disease Support and
Research Association
120 Humphries Dr., Ste 2
Reynoldsburg, OH 43068
(800) 448-4570
(740) 927-4298
* bdsra1@bdsra.com
http://www.bdsra.org
1,2,3,4,5,6,7,8,9
Spanish/Portugese/German/
French materials

Batten Disease Support and
Research Association, Canadian
Chapter
c/o Bev Maxim
17 Bell St.
Regina, SK
CAN S4S 4B7
(306) 789-9047
(800) 400-8968
* bdsra1@bdsra.org
http://www.bdsra.org
1,2,3,4,5,6,7,8,9

National Batten Disease Registry
1050 Forest Hill Rd.
Staten Island, NY 10314-6399
(800) 952-9628
(718) 494-5201
(718) 982-6346 (fax)
* edith.docktee@omr.state.ny.us
2,4,5,9; genetic counseling,
diagnostic testing

BATTEN-MAYOU SYNDROME

See: Batten Disease

BATTEN-SPIELMEYER-VOGT
DISEASE

See: Batten Disease

BBB SYNDROME

See: Opitz Syndrome

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.beckwith-wiedemann.org
1,2,3,4,6

BEDWETTING

See: Incontinence

BEHCET'S DISEASE

See: Autoimmune Disorders

BELL'S PALSY

Bell's Palsy Research Foundation
9121 E. Tanque Verde
Ste. 105-286
Tuscon, AZ 85749
(520) 749-4614
(520) 749-0489 (fax)
* BellsPalsy@aol.com
2,3,4,8,9

BENIGN CONGENITAL
HYPOTONIA

See: Spinal Muscular Atrophy

BERGER DISEASE

See: Kidney Disorders

BETA THALASSEMIA MAJOR

See: Cooley Anemia

BEUREN SYNDROME

See: Williams Syndrome

BIOTINIDASE DEFICIENCY

See: Metabolic Disorders

BIRTHMARK

See: Nevi, Giant Congenital

BLEEDING DISORDERS

See: Hemophilia

BLEPHAROPHIMOSIS, PTOSIS,
EPICANTHUS INVERSUS
SYNDROME (BPES)

See also: Craniofacial
Disorders

Blepharophimosis, Ptosis,
Epicanthus Inversus Family
Network
c/o Lynne Schauble
SE 820 Meadow Vale Dr.
Pullman, WA 99163,
(509) 332-6628
* lschauble@gocougs.wsu.edu
1,2,3,9

BLEPHAROSPASM

See: Dystonia

BLINDNESS

See: Visual Impairments

BLOCH-SULZBERGER
SYNDROME

See: Incontinentia Pigmenti

BLOOM SYNDROME

See: Cancer; Immune
Disorders; Growth Disorders;
Short Stature

BONE MARROW TRANSPLANT

See also: Cancer

Blood & Marrow Transplant
Information Network
2900 Skokie Valley Rd., Ste B
Highland Park, IL 60035
(888) 597-7674
(847) 433-3313
(847) 433-4599 (fax)
* help@bmtinfonet.org
http://wwwbmtinfonet.org
1,2,3,9; legal referral for
insurance problems

BONE TUMOR-EPIDERMOID
CYST-POLYPOSIS

See: Colon Cancer, Hereditary;
Polyposis

BONNEVIE-ULRICH SYNDROME

See: Turner Syndrome

BOOK SYNDROME

See: Ectodermal Dysplasias

BOURNEVILLE PRINGLE
SYNDROME

See: Tuberous Sclerosis

BOWEL DYSFUNCTION/
IRRITABLE BOWEL SYNDROME

See also: Gastrointestinal
Disorders

International Foundation for
Functional Gastrointestinal
Disorders (IFFGD)
PO Box 170864
Milwaukee, WI 53217
(888) 964-2001
(414) 964-1799
(414) 964-7176 (fax)
* IFFGD@iffgd.org
http://www.iffgd.org
1,2,4,6,7,9

BRACHIAL PLEXUS INJURY

See: Erb Palsy

BRACHMANN-DE LANGE
SYNDROME

See: Cornelia de Lange
Syndrome

BRAIN ATTACK

See: Stroke

BRAIN INJURY

See also: Aphasia, Acquired

Brain Injury Association of
America
Chris Fuller, Public Relations
Specialist
105 N. Alfred St.
Alexandria, VA 22314
(703) 236-6000
(703) 236-6001 (fax)
* publicrelations@biausa.org
http://www.biausa.org
5,7,9

Coma Recovery Association, Inc.
Paulette Demato, Program
Coordinator
807 Carman Ave.
Westbury, NY 11590
(516) 997-1826
(516) 997-1613 (fax)
* crainfo@comarecovery.org
http://www.comarecovery.org
1,2,7

BRAIN STEM
MALFORMATIONS

See: Arnold-Chiari
Malformation; Joubert
Syndrome; Syringomyelia

BRAIN TUMORS

See also: Acoustic Neuroma;
Brain Injury; Cancer; Epilepsy;
Pituitary 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
1,2,3,4,6,7,8 Spanish materials

Brain Tumor Foundation for
Children, Inc.
1835 Savoy Dr., Ste. 316
Atlanta, GA 30341
(770) 458-5554
(770) 458-5467 (fax)
* btfc@btfc.org
http://www.braintumour.ca
1,2,3,4,5,6,8 materials

Brain Tumor Foundation of Canada
650 Waterloo St., Ste. 100
CAN N6B 2R4 London, ON
(800) 265-5106
(519) 642-7755
(519) 642-7192 (fax)
* info@btfc.org
http://www.btfc.org
1,2,3,4,6,8,9 French materials

Brain Tumor Society
124 Watertown St., Ste. 3-H
Watertown, MA 02472
(800) 770-8287
(617) 924-9997
(617) 924-9998 (fax)
* info@tbts.org
http://www.tbts.org
1,2,3,6,7,8

Children's Brain Tumor
Foundation
274 Madison Ave., Ste. 1301
New York, NY 10016
(212) 448-9494
(866) CBT-HOPE (228-4673)
(212) 448-1022 (fax)
* cbtfny@aol.com
http://www.cbtf.org
1,2,3,4 Referrals to national
resources 6,7,8

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 Spinal Cord
Tumors, Seminars

National Brain Tumor Foundation
Cathy Clarence
414 Thirteenth St., Ste. 700
Oakland, CA 94612-2603
(800) 934-2873 (info line)
(510) 839-9777
(510) 839-9779 (fax)
* nbtf@braintumor.org
http://www.braintumor.org
1,2,3,4,6,8

BRANCHED CHAIN KETONURIA

See: Maple Syrup Urine Disease

BRANCHER DEFICIENCY

See: Glycogen Storage
Diseases

BRANCHIO-OTO-RENAL
SYNDROME

See: Craniofacial Disorders;
Hearing Impairments; Kidney
Disorders

BRITTLE BONE DISEASE

See: Osteogenesis Imperfecta

BROAD THUMB-HALLUX
SYNDROME

See: Rubinstein-Taybi
Syndrome

BURKE SYNDROME

See: Shwachman Syndrome

BURNS

Phoenix Society for
Burn Survivors
1840 Wealthy SE
Ste. 215
East Grand Rapids, MI 49506
(800) 888-2876
(616) 458-2773
(616) 458-2831 (fax)
* Info@phoenix-society.org
http://www.phoenix-society.org
1,2,3,4,5,6,7,9

CALLOSAL AGENESIS

See: Agenesis of the Corpus
Callosum; Aicardi Syndrome

CAMARENA SYNDROME

See: Ectodermal Dysplasias

CAMPTOMELIC SYNDROME
See: Growth Disorders;
Short Stature

CANAVAN DISEASE

See also: Leukodystrophy;
Tay-Sachs Disease

The Canavan Research
Foundation
Fairwood Professional Building
New Fairfield, CT 06812
(203) 746-2436
(203) 746-3205 (fax)
* canavanresearch@aol.com
http://www.canavan.org/
2,3,7,6,9

CANCER

See also: Bone Marrow
Transplant; Brain Tumors;
Colon Cancer, Hereditary;
Leukemia; Lymphedema;
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

CAN MdV 3B1 Toronto, ON
(416) 961-7223
(416) 961-4189 (fax)
* ccs@cancer.ca
http://www.cancer.ca
1,2,3,4,5,7,8 French materials

Candlelighters Childhood Cancer
Foundation
3910 Warner SL
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
CAN M4P 1G8 Toronto, ON
(800) 363-1062 (Canada only)
(416) 489-6440
(416) 489-9812 (fax)
* staff@candlelighters.ca
http://www.candlelighters.ca
1,2,3,4,5,6,7,6 French
materials

CANCER, BRAIN

See: Brain Tumors

CANCER, GASTROINTESTINAL

See: Colon Cancer, Hereditary;
Polyposis

CARBAMYL PHOSPHATE
SYNTHETASE (CPS) DEFICIENCY

See: Urea Cycle Disorders

CARDIAC DISORDERS

See: Heart Disorders

CARDIO-FAClO-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 Disorders;
Mitochondrial Disorders;
Muscular Dystrophy

CARPENTER SYNDROME

See: Craniofacial Disorders

CARTILAGE-HAIR HYPOPLASIA

See: Dwarfism; Growth
Disorders; Short Stature

CARTILAGENOUS
ENCHONDROSES, MULTIPLE

See: Ollier Disease

CAT'S CRY SYNDROME

See: Cri Du Chat Syndrome

CAUSALGIA SYNDROME

See: Reflex Sympathetic
Dystrophy Syndrome

CELIAC DISEASE

See also: Celiac Sprue; Gluten
Intolerance

Canadian Celiac Association
5170 Dixie Rd, Ste 204
CAN L4W 1E3 Mississauga, ON
(800) 363-7296 (Canada only)
(905) 507-6208
(905) 507-4673 (fax)
celiac@look.ca
http://www.celiac.ca
1,2,4,5,6,7,6 French materials

Celiac Disease Foundation
13251 Ventura Blvd.
#1 Studio City
Los Angeles, CA 91604-1838
(818) 990-2354
(818) 990-2379 (fax)
* cdf@celiac.org
http://www.celiac.org
1,2,3,4,7,9

CELIAC SPRUE

See also: Celiac Disease;
Gluten Intolerance

American Celiac Society
59 Crystal Ave.
West Orange, NJ 07052-3570
(973) 325-8837
(973) 669-8808 (fax)
* amerceliacsoc@netscape.net
1,2,4,5,6 speakers bureau

American Celiac Society Dietary
Support Coalition
59 Crystal Ave.
West Orange, NJ 07052
(973) 325-8837
(973) 669-8808 (fax)
* bentleac@umdnj.edu
1,2,3,4,5,6,7,8 speakers
bureau

CENTRAL HYPOVENTILATION
SYNDROME, CONGENITAL

See also: Apnea, Sleep;
Intestinal Pseudo-Obstruction
Syndrome; Ventilator Use

Congenital Central
Hypoventilation Syndrome Family
Support Network
71 Maple St.
Oneonta, NY 13820
* vanderlaanm@hartwick.edu
1,2,3,6,7,9

CEREBELLAR HYPOPLASIA

See: Joubert Syndrome

CEREBELLAR VERMIS
APLASIA/HYPOPLASIA

See: Joubert Syndrome

CEREBELLOOCULOCUTANEOUS
TELANGIECTASIA

See: Ataxia Telangiectasia

CEREBELLORETINAL
HEMANGIOBLASTOMATOSlS

See: Von Hippel-Lindau
Syndrome

CEREBRAL GIGANTISM

See: Sotos Syndrome

CEREBRAL PALSY

Ontario Federation for Cerebral
Palsy
1630 Lawrence Ave. W.,
Ste. 104
CAN M6L 1C5 Toronto, ON
(416) 244-9686
(877) 244-9686
(416) 244-6543 (fax)
* ofcp@ofcp.on.ca
http://www.ofcp.on.ca
1,2,3,4,6 Provincial
conferences, 7. Provincial
Advocacy efforts,9 French
materials

National Brachial Plexus/Erb's
Palsy Association, Inc.
Brenda Copeland-Moore
P.O. Box 23
Larsen, WI 54947
(920) 836-2151
(209) 644-5813 (fax)
* info@nbpepa.org
http://www.nbpepa.org

United Cerebral Palsy
Associations
1660 L St. NW, Ste. 700
Washington, DC 20036-5602
(800) 872-5827
(202) 776-0406
(202) 973-7197 (TDD)
(202) 776-0414 (fax)
* national@ucp.org
http://www.ucp.org
1,2,3,4,5,6,7,8 Spanish
materials, provides direct
services through 130 affiliate
programs

United Cerebral Palsy of NYC
80 Maiden Ln., 8th 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;
Dejerine-Landouzy

Deafness Research Foundation
1225 1 St., Ste. 500
Washington, DC 20005
(202) 289-5850 (voice/TDD):
http://www.hearinghealth.net
1,2,4,7,6,9

Gallaudet University
Office of Public Relations
800 Florida Ave., NE
Washington, DC 20002-3695
(202) 651-5000
(202) 651-5608 (TDD)
(202) 651-5704 (fax)
* public.relations@gallaudet.edu
http://www.gallaudet.edu

HEAR Now: The Us Program of
the Starkey Hearing Foundation
4248 Park Glen Rd.
Minneapolis MN 55416
(800) 648-4327
(952) 828-6946 (fax)
* nonprofit@starkey.com.
1,2,7 accepts tax-deductible
donations of used hearing aids

John Tracy Clinic for Preschool
Deaf Children
806 W. Adams Blvd.
Los Angeles, CA 90007
(800) 522-4582 (voice/TDD)
(213) 748-5481
(213) 747-2924 (TDD)
(213) 749-1651 (fax)
* mmartindale@johntracyclinic.org
http://www.johntracyclinic.org
1,2,4 free correspondence
course for preschoolers,
Spanish materials

Lead Line
House Ear Institute
2100 W. Third St., 5th Fl.
Los Angeles, CA 90057
(800) 352-8888 (voice/TDD)
(800) 287-4763 (voice/TDD)
Canada only)
(213) 484-2642
(213) 483-4431 (TDD)
(213) 483-8789 (fax)
* blincoln@hei.org
http://www.hei.org
2,3,4

National Association of the Deaf
814 Thayer Ave., Ste. 250
Silver Spring, MD 20910-4500
(301) 587-1788
(301) 587-1789 (TDD)
(301) 587-1791 (fax)
* nadinfo@nad.org
http://www.nad.com
1,2,4,5,6,7 youth program
includes Jr NAD clubs and
Youth Leadership Camp

National Deaf Education Network
and Clearinghouse
KDES PAS-6
800 Florida Ave., NE
Washington, DC 20002-3695
(202) 651-5031
(202) 651-5052 (TDD)
(202) 651-5044 (fax)
* Clearinghouse.Infotogo@
gallaudet.edu
http://clerccenter.gallaudet.
edu

SEE Center for the Advancement
of Deaf Children
PO Box 1181
Los Alamitos, CA 90720
(562) 430-1467 (voice/TDD)
(562) 795-6614 (fax)
* seectr@aol.com
http://www.seecenter.org
2,4

SHHH: Self Help for Hard of
Hearing People
7910 Woodmont Ave.,
Ste. 1200
Bethesda, MD 20814
(301) 657-2248
(301) 657-2249 (TDD)
(301) 913-9413 (fax)
* National@shhh.org
http://www.shhh.org
1,2,4,5,6

Telecommunications for
the Deaf, Inc.
8630 Fenton St., Ste. 604
Silver Spring, MD 20910-3803
(301) 589-3786
(301) 589-3006 (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) 928-2500
(416) 964-0023 (TDD)
(416) 928-2525 (fax)
* info@chs.ca
http://www.chs.ca
1,2,3,4,5,6,7

The Learning to Listen
Foundation
Auditory Verbal Therapy
Phillips House
North York General Hospital
10 Buchan Ct.
Toronto, ON
CAN M2J IV2
(416) 491-4648
(416) 491-7215 (fax)
* westabro@nygh.on.ca
http://www.learningtolisten.org
1,2,3,4,6 auditory-verbal
services for children who are
deaf and hard of hearing and
their families; professional
education

National Cued Speech
Association (NCSA)
23970 Hermitage Rd.
Cleveland, OH 44122-4008
(216) 292-6213 (voice/TDD)
(800) 459-3529 (voice/TDD)
* cuedspdisc@aol.com
http://www.cuedspeech.org
1,2,3,4,5,6,7

HEART DISORDERS

See also: Developmental
Disabilities; Autism; Down
Syndrome

American Heart Association
7272 Greenville Ave.
Dallas, TX 75231-4596
(800) 242-8721
(214) 706-1179
(214) 706-2139 (fax)
* inquires@heart.org
http://www.americanheart.org
2,5,6,7 Spanish materials

CHASER: Congenital Heart
Anomalies--Support, Education,
& Resources, Inc.
2112 N. Wilkins Rd.
Swanton, OH 43558
(419) 825-5575
(419) 825-2880 (fax)
* chaser@compuserv.com
* myer106w@cdc.gov
http://www.csun.edu/
~hfmth006/chaser
1,2,3,4,7,9

Children's Heart Association for
Support and Education
c/o Cardiac Clinic
Hosp. for Sick Children
Cathy Sikora
555 University Ave.
Toronto, ON
CAN S5G 1X8
(416) 813-5848
(416) 813-5582 (fax)
1,2,3,4,8,9

Kids With Heart National
Association for Children's Heart
Disorders, Inc.
1578 Careful Dr.
Green Bay, WI 54304-2941
(800) 538-5390 (phone/fax-US
only)
(920) 498-0058 (phone/fax-outside
US)
* kdswhrit@execpc.com
2,3,4,7,9

HEMANGIOMA

See Craniofacial Disorders

HEMIDYSPLASIA, UNILATERAL
See: Ichthyosis

HEMIFACIAL MICROSOMIA

See: Goldenhar Syndrome

HEMIHYPERTROPHY

See: Beckwith-Wiedeman
Syndrome

HEMIMEGALENCEPHALY

Hemimegalencephaly
Support Group
Sue Cowper
40 Olympic Ave.
Shepparton 3630
Victoria, Australia
* hmegroup@cv.quik.com.au
http://www.cv.quik.com.au/h
megroup/

HEMIPLEGIA, ALTERNATING

See also: Epilepsy; Seizure
Disorders

Alternating Hemiplegia of
Childhood Foundation
Lynn Egan, Vice President,
Parent Support
239 Nevada St.
Redwood City, CA 94062
(650) 365-5798 (phone/fax)
* laegan6@sbcglobal.net
http://www.ahckids.org
1

HEMISPHERECTOMY

See: Rasmussen Syndrome

HEMOLYTIC ANEMIA

See: Cooley Anemia

HEMOLYTIC-UREMIC
SYNDROME

See: Kidney Disorders

HEMOPHAGOCYTIC
LYMPHOHISTIOCYTOSIS

See: Histiocytosis

HEMOPHAGOCYTIC
RETICULOSIS

See: Histiocytosis

HEMOPHILIA

National Hemophilia Foundation
116W. 32nd St., 11th Fl.
New York, NY 10001-3212
(800) 424-2639
(212) 328-3700
(212) 328-3777 (fax)
* info@hemophilia.org
http://www.hemophilia.org
1,2,4,5,6,7,6 Spanish materials

World Federation of Hemophilia
1425 Rene Levesque Blvd. W.
Ste. 1010
Montreal, QC
CAN H3G 1T7
(514) 875-7944
(514) 875-8916 (fax)
* wfh@wfh.org
http://www.wfh.org
1,2,4,6,8 worldwide referrals;
guide for travelers

HEMORRHAGIC NODULAR
PURPURA

See: Fabry Disease

HEMORRHAGIC
TELANGIECTASIA,
HEREDITARY (HHT)

Hereditary Hemorrhagic
Telangiectasia (HHT) Foundation
International, Inc.

PO Box 8087
New Haven, CT 06530
(800) 448-6389
(410) 357-9931 (fax)
* hhtinfo@hht.org
http://www.hht.org
1,2,3,5,6,8

HEPATIC DUCTULAR
HYPOPLASIA, SYNDROMATIC

See: Alagille Syndrome

HEPATOPHOSPHORYLASE
DEFICIENCY GLYCOGENOSIS
See: Glycogen Storage
Diseases; Muscular Dystrophy

HEREDITARY KIDNEY DISEASES

See: Kidney Diseases,
Hereditary

HEREDITARY LEPTOCYTOSIS
See: Cooley Anemia

HEREDITARY NONPOLYPOSIS
COLORECTAL CANCER

See: Colon Cancer, Hereditary

HERMANSKY-PUDLAK
SYNDROME

See also: Albinism &
Hypopigmentation; Visual
Impairments

Hermansky-Pudlak Syndrome
Network Inc.
One South Rd.
Oyster Bay, NY 11771
(800) 789-9477
(516) 922-3440
(516) 922-4022 (fax)
* hpsnet@worldnet.att.net
http://www.hpsnetwork.org
1,2,3,6,7,9 includes help for
families struggling with
Chediak Higashi syndrome

HERMAPHRODITISM

See also: Genitalia, Ambiguous

Intersex Society of North America
Cheryl Chase, Executive Director
PO Box 301
Petaluma, CA 94953
(707) 636-0420
(707).636-0419 (fax)
* info@isna.org
http://www.isna.org
7

HERNIA, DIAPHRAGMATIC

CHERUBS The Association Of
Congenital Diaphragmatic
Hernia Research, Advocacy,
and Support.
1109 Williamsboro St.
Oxford, NC 27565
(919) 693-8158
(866) 603-1944
(707) 924-1114 (fax)
* info@cherubs-cdh.org
http://www.cherubs-cdh.org
1,2,3,4,5,6,7,9

HERS DISEASE

See: Glycogen Storage
Diseases; Muscular Dystrophy

HIRSCHSPRUNG DISEASE

See: Intestinal Pseudo-Obstruction
Syndrome

HISTIOCYT0SIS

See also: Growth Disorders;
Liver Disorders; Lung Diseases;
Pituitary Tumors

Histiocytosis Association of
America
72 E. Holly Ave., Ste. 101
Pitman, NJ 08071
(800) 548-2758 (US and
Canada)
(856) 589-6606
(856) 589-6614 (fax)
* histiocyte@aol.com
http://www.histio.org
1,2,3,4,6,8,9 Spanish materials

HIV

See: AIDS

HODGKIN DISEASE

See: Leukemia

HOLOPROSENCEPHALY

See also: Craniofacial
Disorders

The Carter Centers for Brain
Research in Holoprosencephaly
and Related Malformations
c/o Dr. Nancy Clegg
Texas Scottish Rite Hospital for
Children, Dept. of Neurology
Dallas, TX 75219
(214) 559-8411
(214) 559-8383 (fax)
* hpe@tsrh.org
http://hpe.stanford.edu

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-WEBERPEUTZ
SYNDROME

See: Colon Cancer, Hereditary;
Polyposis

HYDROCEPHALUS

The Guardians of Hydrocephalus
Research Foundation National
Headquarters
2618 Ave. Z
Brooklyn, NY 11235
(718) 743-4473
(718) 743-1171 (fax)
* GHRF2618@aol.com
http://ghrf.homestead.com/
ghrf.html
1,2,3,4,8

Hydrocephalus Association
870 Market St., Ste. 705
San Francisco, CA 94102
(415) 732-7040
(415) 732-7044 (fax)
* hydroassoc@aol.com
http://www.hydroassoc.org
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)
* dhydrobuff@aol.com
1,2,3,4,5,6

National Hydrocephalus
Foundation
12413 Centralia Rd.
Lakewood, CA 90715-1623
(562) 402-3523
(562) 924-6666 (fax)
* hydrobrat@earthlink.net
http://www.nhfonline.org
1,2,3,4,5,7 videos and
cassettes available

HYDROCEPHALUS,
OBSTRUCTIVE

See: Dandy-Walker Syndrome

HYPERAMMONEMIA

See: Urea Cycle Disorders

HYPERBILIRUBINEMIA

See: Kernicterus

HYPERCALCEMIA SYNDROME,
INFANTILE, IDIOPATHIC

See: Williams Syndrome

HYPERCALCEMIA-SUPRAVALVAR
AORTIC
STENOSIS

See: Williams Syndrome

HYPERCYSTINURIA

See: Cystinuria

HYPERGLYCINEMIA WITH
KETOACIDOSIS AND
LEUKOPENIA

See: Acidemia, Organic

HYPERLEXIA

See: Autism

Canadian Hyperlexia Association
300 John St.
PO Box 87673
Thornhill, ON
CAN L3T 7R3
(905) 886-9163
(905) 886-4624 (fax)
* cha@ican.net
http://www.home.ican.net/~cha
1,2,3,4,5

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

Hypoparathyroidism
Association, Inc.
2835 Salmon St.
Idaho Fall, ID 83406
(208) 524-3857
(208) 524-2619 (fax)
http://www.hypoparathyroidism
.org
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
Ann Armstrong-Dailey,
Founding Director
901 N. Pitt St. Ste 230
Alexandria, VA 22314
(800) 2-4-CHILD (242-4453)
(703) 684-0330
(703) 684-0226 (fax)
* chiorg@aol.com
http://www.chionline.org
1,2,4,6,7

IMMUNE DEFICIENCY

See: Immune Disorders

IMMUNE DISORDERS

See also: Autoimmune
Disorders

Immune Deficiency Foundation
40 W. Chesapeake Ave.,
Ste. 308
Towson, MD 21204
(800) 296-4433
(410) 321-6647
(410) 321-9165 (fax)
* idf@primaryimmune.org
http://www.primaryimmune.org
1,2,4,5,6,7,8,9 Spanish
materials

IMMUNOLOGIC DISEASES

See: Granulomatous Disease,
Chronic

IMPERFORATE ANUS

See: Anorectal Malformations

INCLUSION BODY MYOSTISIS

See: Immune Disorders

INCONTINENCE

National Association For
Continence
Nancy Muller, Executive Director
PO Box 8310
Spartanburg, SC 29305
(864) 579-7900
(864) 579-7902 (fax)
* memberservices@nafc.org
http://www.nafc.org
2,7

Simon Foundation for Continence
PO Box 835F
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
materials

INCONTINENTIA PIGMENTI

See also: Ectodermal
Dysplasias

National Incontinentia
Pigment/Foundation
30 E. 72th St., 16th Fl.
New York, NY 10021
(212) 452-1231
(212) 452-1406 (fax)
* ipif@ipif.org
http://imgen.bcm.tmc.edu/nipf
1,2,3,4,5,8 informational
materials in 11 different
languages, including English,
Spanish, French, Italian,
Russian, Portuguese, Chinese,
Japanese and others.

INCONTINENTIA PIGMENTI
ACHROMIANS

See: Ectodermal Dysplasias;
Epilepsy; Incontinentia
Pigmenti

INDIA RUBBER SKIN

See: Ehlers-Danlos Syndrome

INFANTILE FACIO-SCAPULO-HUMERAL
MUSCULAR
DYSTROPHY

See: Facio-Scapulo-Humeral
Muscular Dystrophy

INFANTILE HYPERCALCEMIA
SYNDROME, IDIOPATHIC

See: Williams Syndrome

INFANTILE SPASMS

See: Epilepsy

INTESTINAL NEURONAL
DYSPLASIA

See: Intestinal Pseudo-Obstruction
Syndrome

INTESTINAL POLYPOSIS

See: Colon Cancer, Hereditary;
Polyposis

INTESTINAL POLYPOSISCUTANEOUS
PIGMENTATION
SYNDROME

See: Colon Cancer, Hereditary;
Polyposis

INTESTINAL PSEUDO-OBSTRUCTION
SYNDROME

International Foundation For
Functional Gastrointestinal
Disorders (IFFGD)
PO Box 17084
Milwaukee, WI 53217-8076
(414) 964-1799
(414) 964-7176 (fax)
*: aanastas@iffgd.org
http://www.iffgd.org
1,2,3,4,6,8,9

Association of Gastrointestinal
Motility Disorders, Inc.
AGMD International Corporate
Hdqtrs.
11 North St.
Lexington, MA 02420
(781) 861-3874
(781) 861-7834 (fax)
* AGMDInc@aol.com

INTRAHEPATIC BILE
DUCT PAUCITY

See: Alagille Syndrome

INTRAUTERINE GROWTH
RETARDATION

See: Growth Disorders

ISOVALERIC ACIDEMIA (IVA)
See: Acidemia, Organic

ISOVALERYL-COA
CARBOXYLASE DEFICIENCY

See: Acidemia, Organic

JANSKY-BIEL SCHOWSKY
DISEASE

See: Batten Disease;
Tay-Sachs Disease

JEGHERS SYNDROME

See: Colon Cancer, Hereditary;
Polyposis

JERVELL & 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
1931 S, Carlinda
Columbia, MD 21046
(410) 997-8094
* joubertduquette@comcast.net
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; Ollier Disease

KEARNS-SAYRE SYNDROME

See: Heart Disorders;
Mitochondrial Disorders;
Retinitis Pigmentosa; Visual
Impairments

KERATITIS FOLLICULARIS
SPINULOSA DECALVANS

See: Ectodermal Dysplasias;
Ichthyosis

KERATITIS-ICHTHYOSIS-DEAFNESS
(KID) SYNDROME

See: Ectodermal Dysplasias;
Ichthyosis; Hearing Impairments

KERNICTERUS

See also: Cerebral Palsy

Parents of Infants and Children
with Kernicterus (PICK)
517 Brentwood Dr.
Birmingham, AL 35226
Contact: Karen Dixon
(205) 979-2021
* ktdixon1@home.com
http://www.bilirubin.net
1,2,3,4,6,7,6,9

KETOACIDURIA

See: Maple Syrup Urine
Disease

KETOTIC HYPERGLYCINEMIA

See: Acidemia, Organic

KID SYNDROME

See: Ectodermal Dysplasias;
Ichthyosis; Hearing Impairments

KIDNEY DISEASES,
HEREDITARY

See also: Cystinosis; Kidney
Disorders; Oxalosis &
Hyperoxaluria

Hereditary Nephritis Foundation
1390 W. 6690 S., #202H
Murray, UT 84123
(801) 262-5901 (phone/fax)
http://www.cc.utah.edu/~cla62
02/HNF.htm
1,3,4

KIDNEY DISORDERS

See also: Cystinosis; Kidney
Diseases, Hereditary;
Oxalosis & Hyperoxaluria

American Association of Kidney
Patients
106 S. Ashley Dr., Ste. 315
Tampa, FL 33602
(800) 749-2257
(813) 636-8122
(813) 223-0001 (fax)
* info@aakp.org
http://www.aakp.org
1,2,4,5,6,7,8

American Kidney Fund
6110 Executive Blvd., Ste. 1010
Rockville, MD 20852
(800) 638-8299
(301) 881-3052
(301) 881-0898 (fax)
* helpline@akfinc.org
http://www.akfinc.org
1,2,6,8 Spanish materials,
financial assistance for
treatment-related expenses

Child & Youth Clinical Trials
Network (CYCTN)
Spencer Russ, Acting Director
Cheo-Research Institute
401 Smith Rd.
Ottawa, ON
CAN K1H 8L1
(613) 737-4098
(613) 738-4800 (fax)
2,4

Kidney Foundation of Canada
300-5165 Sherbrooke St. W.
Montreal, QC
CAN H4A IT6
(514) 369-4806
(514) 369-2472 (fax)
* kathleen@kid ney. ca
http://www.kidney.ca
2,3,4,5,8 French/Chinese/
Punjabi materials

National Kidney Foundation
30 E. 33rd St., Ste. 1100.
New York, NY 10016
(800) 622-9010
(212) 889-2210
(212) 689-9261 (fax)
http://www.kidney.org
1,2,4,5,6,7,8

PKD Foundation
Dave Switzer, Marketing/Public
Relations Director
4901 Main St., Ste. 200
Kansas City, MO 64112-2634
(800) 753-2873
(816) 931-8655 (fax)
* pkdcure@.pkdcure.org
http://www.pkdcure.org
7,9

KIDNEY STONES

See: Cystinuria

KINKY HAIR DISEASE

See: Menkes Disease

KIRGHIZIAN
DERMATOOSTEOLYSIS

See: Ectodermal Dysplasias

KLINEFELTER 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. 47, XXX and 47,
XYY
PO Box 2119
Loomis, CA 95650
(916) 660-1599
(888) 999-9428 (toll free line)
(916) 660-1899 (fax)
* info@genetic
http://www.genetic.org
1,2,3,4,5,6,7,8,9 Spanish
materials

Klinefelter's Syndrome
Association of America
N5879 30th Rd.
Pine River, WI 54965
(920) 987-5782
1,2,3,5

KLIPPEL-TRENAUNAY SYNDROME

See also: Nevi, Giant Congenital;
Sturge-Weber Syndrome;

Klippel-Trenaunay Support Group
c/o Judy Vessey
5404 Dundee Rd.
Edina, MN 55436
(652) 925-2596
* jvessey@qwest.net
http://www.k-t.org
1,2,3,4,5,6,9

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
PARALYSIS

See: Guillain-Barre Syndrome

KYPHOSIS

See: Scoliosis

LACTATE DEHYDROGENASE
DEFICIENCY

See: Muscular Dystrophy

LACTIC ACIDOSIS

See also: Glutaric Aciduria,
Type I; Metabolic Disorders

Congenital Lactic Acidosis Family
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 PARALYSIS

See: Guillain-Barre Syndrome

LANGER-GIEDION SYNDROME

See: Ectodermal Dysplasias;
Exostoses, Multiple Hereditary

LANGERHANS CELL
HISTIOCYTOSIS

See: Histiocytosis

LATEX ALLERGY

Latex Allergy Information Service
176 Roosevelt Ave.
Torrington, CT 06790
(860) 482-6869
(860) 482-2294 (fax)
* debilan1@cs.com
http://www.latexallergyhelp.
com
1,2,4,6

LAURENCE-MOON SYNDROME

See: Laurence-Moon-Bardet-Biedl
Syndrome

LAURENCE-MOON-BARDET-BIEDL
SYNDROME (LMBBS)

See also: Kidney Disorders;
Retinitis Pigmentosa

Laurence-Moon-Bardet-Biedl
Syndrome Network
(LMBBS)
11435 Crowhill Dr.
Owings Mills, MD 21117
(888) 394-3937 (toll free)
(800) 683-5551 (TDD)
(410) 569-0150
(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
Jane Browning
Executive Director
4156 Library Rd.
Pittsburgh, PA 15234
(412) 341-1515
(412) 344-0224 (fax)
* linfo@ldaamerica.org
http://www.ldanatl.org
2,4,

The Learning Disabilities
Association of Canada
(National Office)
323 Chapel St.
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 City
27 W. 20 St., Rm 303
New York, NY 10011
(212) 645-6730
(212) 924-8896 (fax)
* lldanyc@earthlink.net
2,4

National Center for
Learning Disabilities
Pazit Algazi Communications
Marketing Coordinator
381 Park Ave. S, Ste 1401
New York, NY 10016
(212) 545-7510
(212) 545-9665 (fax)
http://www.ld.org
9

Parents of Gifted/LD Students
2420 Eccleston St.
Silver Spring, MD 20902-4925
(301) 986-1422
(301) 924-9304 (fax)
* jilmeyers@aol.com
http://www.geocities.com/athe
ns/1105/gtld.htm
1,2,3,4,5

Resource for Children with
Special Needs, Inc.
116 E. 16th St., 5th Fl.
New York, NY 10003
(212) 677-4650
(212) 254-4020 (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 for Research in
Developmental Disabilities
PO Box 339
Peapack, NJ 07977
(908) 234-0618
(908) 234-0963 (fax)
* research@matheny.org
http://www.matheny.org
2,3,9

Lesch-Nyhan Registry
Dept. of Psychiatry
New York Univ. School
of Medicine
550 First Ave.
New York, NY 10016
(212) 263-6458
(212) 629-9523 (fax)
* andersnl@is2.nyu.edu

LETTERER-SIWE DISEASE

See: Histiocytosis

LEUKEMIA

See also: Bone Marrow
Transplant; Cancer

Leukemia Research Fund
of Canada
Attn: Maureen E. Thornton
936 The East Mall
Toronto, ON
CAN M9B 6J9
(800) 268-2144 (Canada only)
(416) 661-2875
(416) 661-3840 (fax)
* lrfc@lrfc.org
http://www.leukemia.ca
1,2,4,5,8

Leukemia & Lymphoma Society
1311 Mamaroneck Ave, 3rd Fl.
White Plains, NY 10605
(800) 955-4572
(914) 949-5213
(914) 949-6691 (fax)
http://www.leukemia-lymphoma.org
1,2,3,4,5,6,7,8 Spanish
materials

LEUKODYSTROPHY

See also: Myelin Disorders,
Tay-Sachs Disease

United Leukodystrophy
Foundation
2304 Highland Dr.
Sycamore, IL 60178
(800) 728-5483
(815) 895-3211
(815) 895-2432 (fax)
* ulf@tbcnet.com
http://www.ulf.org
1,2,3,4,6,8,9 Spanish/French
materials

LEUKODYSTROPHY,
METACHROMATIC

See: Leukodystrophy,
Tay-Sachs Disease

LIMB DIFFERENCES

See: Limb Disorders

LIMB DISORDERS

See also: Amputation

Superkids
Peter McLoughlin
60 Clyde St.
Newton, MA 02460-2250
http://www.super-kids.org
1,3

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
* gmcafee@ptd.net
http://www.home.ptd.net/~ifsn

LISSENCEPHALY

See also: Epilepsy

Lissencephaly Network, Inc.
10408 Bitterroot Ct.
Fort Wayne, IN 46804
(219) 432-4310 (voice/fax)
* ltal@is2.nyu.edu
http://www.lissencephaly.org
1,2,3,4,9

The Lissencephaly Network,
Inc.--Canada Division
1549 Regent St.
Regina, SK
CAN S4N 1S1
(219) 432-4310
http://www.lissencephaly.org
1,2,3,4,6,8,9 toy-lending
library

LIVER DISEASE AND
TRANSPLANT (PEDIATRICS)

See also: Liver Disorders

Children's Liver Alliance (formerly
the Biliary Atresia & Liver
Transplant Network, BALT)
3835 Richmond Ave.,
Box 190
Staten Island, NY 10312-3828
(718) 987-6200 (voice/fax)
* Livers4Kids@earthlink.net
http://www.livertx.org
1,2,3,4,5,6,7,9 Spanish
materials

LIVER DISORDERS

American Liver Foundation
75 Maiden Ln., Ste. 603
New York, NY 10038-4810
(800) 223-0179,
(800) GO-LIVER (465-4837),
(888)4-HEP-ABC (443-7222),
(212) 668-1000,
(212) 483-8179 (fax)
* webmail@liverfoundation.org
http://www.liverfoundation.org
1,2,4,5,7,6,9 Spanish materials

Canadian Liver Foundation
2235 Sheppard Ave. E.,
Ste. 1500
Toronto, ON
CAN M2J 585
(800) 563-5483 (Canada only)
(416) 491-3353
(416) 491-4952 (fax)
* clf@liver.ca
http://www.liver.ca
1,2,3,4,5,8 French materials

LIVER PHOSPHORYLASE
DEFICIENCY

See: Glycogen Storage
Diseases; Muscular Dystrophy

LOBSTEIN DISEASE, TYPE I

See: Osteogenesis Imperfecta

LONG Q-T SYNDROME

See also: Heart Disorders

International Long Q-T
Syndrome Registry
Jennifer Robinson
University of Rochester Med Ctr,
Box 653
Rochester, NY 14642-8653
(716) 275-5391
(716) 473-2751 (fax)
http://www.longqt.org/
longqtreg.html

Sudden Arrhythmia Death
Syndromes (SADS) Foundation
508 E. South Temple, Ste. 20
Salt Lake City, UT 84102
(800) 786-7723
(801) 531-0945 (fax)
* sads@sads.org
http://www.sads.org
1,2,3,4.6,8,9 Spanish materials

LORDOSIS

See: Scoliosis

LOW VISION

See: Visual Impairments

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
61 Broadway, 6th Fl.
New York, NY 10006
(800) LUNG-USA (586-4872)
(212) 315-8700
(212) 265-5642 (fax)
(212) 315-8872 (fax)
* info@lungusa.org
http://www.lungusa.org
2,4,5,6,7,6 Spanish materials

Canadian Lung Association
Attn: Deirdre Freiheit
3 Raymond St Ste 300
Ottowa, ON
CAN K1R 1A3
(613) 564-6411
(613) 747-7430 (fax)
* info@lung.ca
http://www.lung.ca
2,4,5,6,7

LUPUS ERYTHEMATOSIS

Lupus Foundation of America
Duane Peters, Communications
and Advocacy
1300 Piccard Dr., Ste. 200
Rockville, MD 20850
(888) 385-8787
(301) 670-9292
(301) 670-9486 (fax)
* info@lupus.org
http://www.lupus.org
5,8 9 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

8 Crown Steel Dr., Ste. 209
Markham ON
Canada L3R 9X8
(905) 513-0004
(905) 513-9516 (fax)
* lupuscanada@bellnet.ca
http://www.lupuscanada.org
2,4,5,6,7,8 French materials

LYME DISEASE

American Lyme Disease
Foundation, Inc.
Mill Pond Offices
293 Rt. 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

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

See also: elephantiasis genetic
disorders cancer Lymphedema

NAT'L LYMPHEDEMA NETWORK
Saskia R.J. Thiadens, RN
Executive Director
1611 Telegraph Ave., Ste. 1111
Oakland, CA 94612-2138
(510) 208-3200
(510) 208-3110 (fax)
* nln@lymphnet.org
http://www.lymphnet.org
2,4

LYMPHOHISTIOCYTOSIS,
FAMILIAL ERYTHROPHAGOCYTIC

See: Histiocytosis

LYMPHOHISTIOCYTOSIS,
HEMOPHAGOCYTIC

See: Histiocytosis

LYMPHOHISTIOCYTOSIS,
MALIGNANT

See: Cancer; Histiocytosis

LYMPHOMA

See: Leukemia

LYSOSOMAL STORAGE
DISEASES

See: Fabry Disease; Gaucher
Disease;
Mucopolysaccharidosis,
Niemann-Pick Disease; Pompe
Disease; Tay-Sachs Disease

MACULAR DEGENERATION

See: Retinitis Pigmentosa

MACULAR DISEASES

See also: Retinitis Pigmentosa;
Usher Syndrome; Visual
Impairments

Association for Macular Diseases
210 E. 64th St.
New York, NY 10021
(212) 605-3777
(212) 605-3795 (fax)
* macula@macula.org
http://www.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
Macular Degeneration
International
6700 N. Oracle Rd, Ste. 505
Tucson, AZ 85704
(800) 393-7634
(520) 797-2525
(520) 797-8018 (fax)
* info@macular-degeneration.org
http://www.maculardegeneration.org
1,2,3,4,6,8

MACULAR DYSTROPHIES,
JUVENILE

See: Macular Diseases

MAFFUCCI SYNDROME

See: Cancer; Ollier Disease

MALE SEX
CHROMOSOME DISORDERS

See: Klinefelter Syndrome

MALIGNANT HYPERTHERMIA

Malignant Hyperthermia
Assocation
Carole Elliott, Administrator
200 Elizabeth St., Rm EC11-307
CCRW, Rm. 2-834
Toronto, ON
CAN M5G 2C4
(416) 340-3238
(416) 340-4960 (fax)
* carole.elliott@uhn.on.ca
http://www.mhacanada.org
1,2

Malignant Hyperthermia
Association of the United States
39 E. State St.
PO Box 1069
Sherburne, NY 13460
(800) 644-9737,
(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: Metabolic Disorders

Maple Syrup Urine Disease
Family Support Group
Joyce Brubacher
24806 SR119
Goshen, IN 46526
(574) 862-2992
* msud-support@
characterlink.net
http://www.msud-support.org
1,2,3,4,6,7,8

MARDEN-WALKER SYNDROME

See: Cleft Palate; Connective
Tissue Disorders; Growth
Disorders

MARFAN SYNDROME

See also: Connective Tissue
Disorders; Heart Disorders;
Scoliosis

Canadian Marfan Association
Laura Libralesso Executive
Director
Centre Plaza Postal Outlet
128 Queen St., S.
PO Box 42257
Mississauga, ON
Canada LSM 420
(905) 826-3223
(905) 826-2125 (fax)
* info@marfan.ca
http://www.marfan.ca
2,9

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://ww.marfan.org
1,2,3,4,5,6,7,8

MARKER X SYNDROME

See: Fragile X Syndrome

MARTEAUX-LAMY SYNDROME

See: Mucopolysaccharidosis;
Tay-Sachs Disease

MARSHALL SYNDROME,
TYPE I

See: Ectodermal Dysplasia

MARTIN-BELL SYNDROME

See: Fragile X Syndrome

MAST CELL DISEASE,
SYSTEMIC

Mastocytosis Society
433 E. 300 S.
Spanish Fork, UT 84660-2147
(801) 798-2032
(801) 794-2980 (fax)
* cybermom@uswest.net
* BillA@Mastocytosis.com
http://www.mastocytosis.com
1,2,5,6

MCARDLE DISEASE

See: Glycogen Storage
Diseases; Muscular Dystrophy

MCCUNE-ALBRIGHT SYNDROME

See also: Growth Disorders

MAGIC Foundation
McCune-Albright Syndrome
Division
6645 W. North Ave.
Oak Park, IL 60302
(800) 362-4423
(708) 383-0808
(708) 383-0899 (fax)
* mary@magicfoundation.org
http://www.magicfoundation.org
1,2,3,4,6 Spanish materials,
pen pal program for children

MEDITERRANEAN ANEMIA

See: Cooley Anemia

MEDIUM-CHAIN ACYL-COA
DEHYDROGENASE DEFICIENCY
(MCAD)

See: Fatty Oxidation Disorders

MEDULLOBLASTOMA,
HEREDITARY

See: Brain Tumors

MEERKEREN-EHLERS-DANLOS
SYNDROME

See: Ehlers-Danlos Syndrome

MEIGE DISEASE

See: Lymphedema

MELANOLEUCODERMA
ECTODERMAL DYSPLASIAS

See: Colon Cancer, Hereditary;
Polyposis

MELAS SYNDROME

See: Growth Disorders; Lactic
Acidosis; Mitochondrial
Disorders

MELNICK NEEDLES
SYNDROME

See: Growth Disorders

MEN SYNDROME I

See: Multiple Endocrine
Neoplasia I

MENIERE'S SYNDROME

See: Balance Disorders &
Dizziness

MENINGEAL CAPILLARY
ANGIOMATOSIS

See: Sturge-Weber Syndrome

MENKES DISEASE

See also: Liver Disorders;
Metabolic Disorders

Corporation for Menkes Disease
5720 Buckfield Ct.
Fort Wayne, IN 46804
(219) 436-0137 (phone/fax)
1,2,3,6,9 parent-professional
network.

MENTAL ILLNESS

See also: Mental
Retardation/Mental Illness

Canadian Mental Health
Association
2160 Yonge St.
Toronto, ON
CAN M4S 2Z3
(416) 484-7750
(416) 484-4617 (fax)
* cmhanat@interlog.com
http://www.cmha.ca
1,2 French materials

Family Network on Disabilities of
Florida, Inc.
Jan LaBelle,Executive Director
2735 Whitney Rd.
Clearwater, FL 33760
(813) 523-1130
(813) 523-8687 (fax)
* fnd@fndfl.org
http://www.fndfl.org
2

Federation of Families for
Children's Mental Health
Barbara Huff, Executive Director
1101 King St., Ste. 420
Alexandria, VA 22314
(703) 684-7710
(703) 836-1040 (fax)
* ffcmh@ff.cmh.org
http://www.ffcmh.org
1,2,3,4,5,6,7 Spanish material

Mental Health
Association of Colorado
6795 E. Tennessee Ave.,
Ste. 425
Denver, CO 80224
(303) 377-3040
(303) 377-4920 (fax)
http://www.MHAcolorado.org
1,2,4

National Alliance for the
Mentally III
Colonial Pl. 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
2001 Beauregard St., 12th Fl.
Alexandria, VA 22311
(800) 969-6642
(703) 684-5968 (fax)
* infoctr@nmha.org
http://www.nmha.org
1,2,4,5,6,7

National Mental Health Services
Knowledge Exchange Network
(KEN)
PO Box 42490
Washington, DC 20015
(800) 789-2647
(301) 984-8796 (fax)
* ken@mentalhealth.org
http://www.mentalhealth.org

Parents & Children
Coping Together-PACCT
PO Box 26691
Richmond, VA 23261-6691
(800) 477-0946
(804) 559-6833
(804) 559-6835 (fax)
* pacct@richmond.infi.net

The Parent Connection
PO Box 0
Santa Fe, TX 77510
(800) 839-8876
(409) 756-8321
(409) 925-7773 (fax)

Utah Parent Center
2290 E. 4500 S., Ste. 110
Salt Lake City, UT 84117
(800) 468-1160 (UT only)
(801) 272-1051
(801) 272-8907 (fax)
* upc@inconnect.com

MENTAL RETARDATION

See also: Mental Illness;
Mental Retardation/Mental
Illness; Down Syndrome;
Cerebral Palsy; Autism

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--Dallas
Michelle M. Lynch, Habilitative
Specialist/Case Manager
2245 Midway Rd., #300
Carrolton, TX 75006
(972) 866-9989
(972) 991-0834(fax)
* donahue@bethphage.org
http://www.beth phage.org
4,5

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

The Roeher Institute
Roslyn Ward, Manager,
Information Services
Kinsmen Bldg., York University,
4700 Keele St.
Toronto, ON
CAN M3J 1P3
(416) 661-9611
(416) 661-5701 (fax)
* info@roeher.ca
http://www.cacl.ca
1,9

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
Roiling 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 Retardation
444 N Capitol St., Ste. 846
Washington, DC 20001
(800) 424-3688
(202) 387-1968
(202)387-2193 (fax)
* anam@aamr.org
http://www.aamr.org
1,2,4,5,6

Developmental Disabilities
Nurses Association (DDNA)
1733 H St., Ste. 330
PMB 1214
Blaine, WA 98230
(800) 888-6733
(360) 322-2280 (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
(845) 331-4569 (fax)
* thenadd@aoLcom
http://www.thenadd.org
1,2,3,4,5,6,7 National,
informational, and Regional
Conferences'

MERRF SYNDROME

See: Myoclonus;
Mitochondrial Disorders

METABOLIC DISORDERS

See also: Acidemia, Organic;
Galactosemia; Lactic Acidosis;
Maple Syrup Urine Disease;
Neurotransmitter Diseases,
Pediatric; Niemann-Pick
Disease; Phenylketonuria
(PKU) Cobalamin (B12)
Defiency

Climb
The Quadrangle Crewe Hall
Climb Bldg.
176 Nantwich Rd.
Crewe, CW2 6BG UK
(44)870700326
* info@climb.org.uk
http://www.climb.org.uk
1,2,3,4 (in UK)5,6,7,8,9,
English, French, German,
Spanish materials

The World Life Foundation
PO Box 571
Bedford, TX 76095-0571
(800) 289-5433
(817) 285-0216 (fax)
* loubaum@airmail.net
Offers air transport for client
and one parent to facility for
metabolic disorders treatment.

METACHROMATIC
LEUKODYSTROPHY

See: Leukodystrophy; 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 Connecticut Ave. NW,
Ste. 404
Washington, DC 20008-2304
(202) 966-5557
(202) 966-8553 (fax)
(800) 336-GENE (4363) helpline
* info@geneticalliance.org
http://www.geneticalliance.org
1,2,3,4,6,7,9 Spanish materials

March of Dimes Birth Defects
Foundation
233 Park Ave. S
New York, NY 10003
(212) 353-8353
(212) 254-3518 (fax)
* NY639@modimes.org
http://www.modimes.org
2,5,7,8

National Institute of Neurological
Disorders & Stroke (NINDS)
PO Box 5801
Bethesda, MD 20824
(800) 352-9424
(301) 468-5981
* braininfo@ninds.nih.gov
http://www.ninds.nih.gov
2,9

MICROPHTHALMIA

See: Anophthalmia; Visual
Impairments

MICROSOMIA, HEMIFACIAL

See: Craniofacial Disorders;
Goldenhar Syndrome

MICROTIA

See: Craniofacial Disorders

MIGRAINES

See Hemiplegia, Alternating

MIKAELIAN SYNDROME

See: Ectodermal Dysplasias

MILLER SYNDROME

See: Nager & Miller Syndromes

MILLER-DIEKER SYNDROME

See: Lissencephaly

MILLER-FISCHER SYNDROME

See: Guillain-Barre Syndrome

MILROY DISEASE

See: Lymphedema

MITOCHONDRIAL DISORDERS

United Mitochondrial Disease
Foundation
Dr. Georgette H. Demes
8085 Saltsburg Rd., Ste. 201
Pittsburgh, PA 15239
(412) 793-8077
(412) 793-6477 (fax)
* info@umdf.org
http://www.umdf.org
9

Muscular Dystrophy
Association
Bob Mackle: Director of Public
Information
3300 E. Sunrise Dr.
Tucson, AZ 85718-3208
(800) 572-1717
(520) 529-5300 (fax)
* mda@mdausa.org
http://www.mdausa.org
http://www.mdaenespanol.org
2,3,4,5,8,9

Muscular Dystrophy Family
Foundation, Inc.
2330 N. Meridian St.
Indianapolis, IN 46208-5730
(800) 544-1213
(317) 923-MDFF (6333)
(317) 923-6334 (fax)
* mdff@mdff.org
http://www.mdff.org

MITOCHONDRIAL MYOPATHY

See: Mitochondrial Disorders;
Muscular Dystrophy, Dejerine-Landouzy

MOEBIUS SYNDROME

See also: Craniofacial
Disorders; Limb Disorders

The Moebius Syndrome
Foundation
PO Box 147
Pilot Grove, MO 65276-0147
(660) 834-3406
(660) 834-3407 (fax)
* vmccarrell@mid.mo-net
www.moebiussyndrome.com

The Moebius Syndrome News
PO Box 20354
Oakland, CA 94620-0354
(510) 835-1318
moebiusca@aol.com

Moebius Syndrome Support Group
38883 Fox Holm Dr.
Palmdale, CA 93551
(805) 267-2570 (voice/fax)
* lorit@netport.com
http://www.wincom.net/moe
bius
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
1,2,34,5,7,8,9

MUCOPOLYSACCHARIDOSIS

See also: Metabolic Disorders;
Tay-Sachs Disease

The National Mucopolysaccharidosis
(MPS) Society
45 Packard Dr.
Bangor, ME 04401
(207) 947-1445
(207) 990-3074 (fax)
* info@mpssociety.org
http://www.mpssociety.org
1,2,3,4,5,6,8,9 Spanish materials

Little People of America
National Headquarters
Box 745
Lubbock, Texas 79408
(888) LPA-2001 (572-2001)
(voice/fax; call first)
(806) 797-8830 (voice/fax; call
first) Engl./Span.
* LPADataBase@juno.com
http://www.lpaonline.org
1,2,3,5,6 Spanish materials

MUCOSULFATIDOSIS

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

MULTIPLE CARBOXYLASE
DEFICIENCY

See: Metabolic Disorders

MULTIPLE ENDOCRINE
NEOPLASlA I

See also: Adrenal Disorders;
Diabetes Mellitus; Thyroid
Disorders

Multiple Endocrine Neoplasia I
Mrs. Cathy McMillan-Fitch
Box 100
Meota, SK
CAN SOM 1X0
(306) 892-2080 (voice/fax)
* hockey_freak99@hotmail.com
http://www.mensociety.com
1,2,3

MULTIPLE HEREDITARY
EXOSTOSlS

See: Ollier's disease

MULTIPLE SCLEROSIS

See also: Spinal Cord Injuries

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.ca
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 DISORDERS

See: Freeman-Sheldon
Syndrome

MUSCULAR DYSTROPHY

See also: Duchenne Muscular
Dystrophy; Muscular
Dystrophy, Becker Muscular
Dystropy

Parent Project Muscular
Dystrophy
Pat Furlong, President
1012 N. University Blvd
Middletown, OH 45042
(800) 714-KIDS (5437)
(513) 424-0696
(513) 425-9907 (fax)
* pat@parentprojectmd.org
http://www.parentdmd.org
2,6

MUSCULAR DYSTROPHY

See also: Facio-Scapulo-Humeral
Muscular Dystrophy;
Ventilator Users; Spinal
Muscular Atrophy; Charcot-Marie-Tooth
Disease;
Friedreich's Ataxia

Muscular Dystrophy
Association
Bob Mackle, Director of Public
Information
3300 E. Sunrise Dr.
Tucson, AZ 85718-3208
(800) 572-1717
(520) 529-5300 (fax)
* mda@mdausa.org
http://www.mdausa.org
http://www.mdaenespanol.org
2,3,4,5,8,9 English, Spanish
materials; clinics; summer
camps; help with equipment
purchase; information on all
types of muscular dystrophy,
as well as SMA, Charcot-Marie-Tooth,
Friedreich's
ataxia, and mitochondrial
myopathy.

Muscular Dystrophy Association
of Canada
2345 Yonge St., Ste. 901
Toronto, ON
CAN M4P 2E5
(800) 567-2873 (Canada only)
(416) 488-2699 ext. 160
(416) 488-0107 (fax)
* motter@mdac.ca
http://www.mdac.ca
1,2,3,4,5,6,7,8 French
materials

Muscular Dystrophy
Family Foundation Inc.
Judith Duncan, President & CEO
Beth Allison,
Director of Social Services
2330 N. Meridian St.
Indianapolis, IN 46208-5730
(800) 544-1213
(317) 923-6334 (fax)
* mdff@mdff.org
http://www.mdff.org
5,7

Society for Muscular Dystrophy
Information International
PO Box 479
Bridgewater, NS
CAN B4V 2X6
(902) 685-3961
(902) 685-3962 (fax)
* smdi@aura.com
http://www.auracom.com/~smi
di/index.html
1,2,4

MUSCULAR DYSTROPHY,
FACIO-SCAPULO-HUMERAL

See: Facio-Scapulo-Humeral
Muscular Dystrophy

MYASTHENIA GRAVIS

See also: Muscular Dystrophy

Myasthenia Gravis Foundation
of America, Inc
Debora K. Boelz CEO
5841 Cedar Lake Rd.,
Ste. 204
Minneapolis, MN 55416
(800) 541-5454
(952) 646-2028 (fax))
* myastheniagravis@msn.com
http://www.myasthenia.org
2,8

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

MYELODYSPLASlA

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

Myoclonus Families United
155 E. 35th St.
Brooklyn, NY11234
(718) 252-2133

Myoclonus Research Foundation
200 Old Palisade Rd., Ste. 17D
Fort Lee, NJ 07024
(201) 585-0770
http://www.myoclonus.com

MYODENYLATE DEAMINASE
DEFICIENCY

See: Muscular Dystrophy

MYOPATHIES, CONGENITAL

See: Myotubular Myopathy, X-Linked

MYOPATHY, CENTRONUCLEAR

See: Myotubular Myopathy, X-Linked;
Muscular Dystrophy

MYOPATHY, HYPERTHYROID

See: Muscular Dystrophy;
Thyroid Disorders

MYOPHOSPHORYLASE
DEFICIENCY

See: Glycogen Storage Diseases

MYOSITIS

See also: Autoimmune
Disorders

National Myositis Association
7720B El Camino Real, Ste. 367
Rancho La Costa, CA 92009
(800) 230-0441
(619) 436-2185
1,2,3,4,5,9

MYOSITIS OSSIFICANS

See: Fibrodysplasis Ossificans
Progressiva

MYOTONIA, CONGENITA

See: Muscular Dystrophy

MYOTUBULAR MYOPATHY,
X-LINKED

See also: Muscular Dystrophy

Myotubular Myopathy Resource
Group
2602 Quaker Dr.
Texas City, TX 77590
(409) 945-8569
* gscoggin@aol.com
http://www.mtmrg.org
1,2,3,9

MYXEDEMA

See: Thyroid Disorders

N-ACETYL GLUTAMATE
SYNTHETASE (NAGS)
DEFICIENCY

See: Urea Cycle Disorders

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 Learning
Disabilities

National Neurofibromatosis
Foundation
John Radziejewski Director of
Public Education
95 Pine St., 16th Floor
New York, NY 10005
(800) 323-7938
(212) 747-0004 (fax)
* nnff@nf.org
http://www.nf.org
2,9

Neurofibromatosis, Inc
9320 Annapolis Rd., Ste. 300
Lanham, MD 20706-2924
(800) 942-6825
(301) 918-4600
(301) 918-0009 (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
(561) 798-0472
(561) 798-9820 (fax)
* acn@latitudes.org
http://www.latitudes.org
1,2

Children's Neurobiological
Solutions
1726 Franceschi Rd.
Santa Barbara, CA 93103
(866) 267-5580 or
(805) 965-8838
* info@cnsfoundation.org
http://www.cnsfoundation.org
8

The Colleen Giblin Foundation
Meg Minassian, Exec. Dir.
690 Kinderkamack Rd., Ste. 104
Oradell, NJ 07649
(201) 262-2463
(201) 262-6442 (fax)
cgf01@aol.com
http://www.colleengiblinfound.
org
8,9

NEUROMETABOLIC
DISORDERS

See: Metabolic Disorders

NEURONAL CEROID
LIPOFUSCINOSES

See: Batten Disease

NEUROPATHY, AUDITORY

See: Kernicterus

NEUROPATHY, HEREDITARY,
SENSORY MOTOR

See: Charcot-Marie-Tooth
Disease

NEUROPATHY, PERIPHERAL

See: Charcot-Marie-Tooth
Disease

NEUROTRANSMITTER
DISEASES, PEDIATRIC

Pediatric Neurotransmitter
Disease Association
6 Nathan Dr.
Plainview, NY 11803
(516) 937-0049
* PND@pndassoc.org
http://www.pndassoc.org
1,2,3,6,7,8,9

NEUTROPENIA

Neutropenia Support Assoc., Inc.
PO Box 243
905 Corydon Ave.
Winnipeg, MB
CAN R3M 3S7
(800) 663-8876;
(204) 489-8454
* stevensl@neutropenia.ca
http://www.neutropenia.ca
1,2,3,4,5,6,7 promotes chapter
development and involvement
with the Neutropenia SCN
International Registry; French
materials

Neutropenia SCN
International Registry

Puget Sound Plaza
1325 4th Ave, Ste. 620
Seattle, WA 98101-2509
(800) 726-4463
(206) 543-9749
(206) 543-3668 (fax)
* registry@u.washington.edu
http://www.depts.washington.
edu/registry
1,2

NEUTROPENIA-PANCREATIC
INSUFFICIENCY

See: Shwachman Syndrome

NEVI, GIANT CONGENITAL

See also: Craniofacial
Disorders; Ichthyosis; Klippel-Trenaunay
Syndrome; Sturge-Weber
Syndrome

Nevus Network
BJ Kelly
PO Box 305
West Salem, OH 44287
(419) 853-4525
* info@nevusnetwork.org
http://www.nevusnetwork.org

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.
Nadine M. Hill,
Associate Director
415 Madison Ave.
PO Box 49
Fort Atkinson, WI 53538
(920) 563-0930
(920) 563-0931 (fax)
* nnpdf@cident.com
http://www.nnpdf.org
2,4,8,9

Ara Parseghian Medical
Research Foundation
3830 E. Campo Abierto,
Ste. 105
Tucson, AZ 85718
(520) 577-5106
(520) 577-5212 (fax)
* victory@parseghian.org
http://www.parseghian.org
1,2,3,6,7,8

NONKETOTIC
HYPERGLYCINEMIA

See: Acidemia, Organic

NOONAN SYNDROME

See also: Growth Disorders;
Heart Disorders; Malignant
Hyperthermia; Williams
Syndrome

(TNSSG) Noonan Syndrome
Support Group, Inc.
PO Box 145
Upperco, MD 21155
(888) 686-2224
(410) 374-5245
* wandar@bellatlantic.net
http://www.noonansyndrome.org
1,2,3,6

NORMAN-ROBERTS
SYNDROME

See: Lissencephaly

NORRIE DISEASE

See also: Hearing Impairments;
Visual Impairments

Norrie Disease Foundation
Developmental Neurogenetics Unit
Mass General Hospital
CNY #6217
149 13 St.
Charlestown, MA 02129
(617) 726-5718
(617) 724-9620 (fax)
* sims@helix.mgh.harvard.edu
http://www.neuro.mgh.
harvard.edu
2,3,4

NUTRITION

The Oley Foundation
214 Hun Memorial A-28
Albany Medical Center
Albany, NY 12208
(800) 776-OLEY (6539)
(518) 262-5079
(518) 262-5528
* bishopj@mail.amc.edu
http://www.oley.org
1,2,3,6,7

NYHAN SYNDROME

See: Lesch-Nyhan Syndrome

OAV SYNDROME

See: Goldenhar Syndrome

OBSESSIVE-COMPULSIVE
DISORDER

OC Foundation
337 Notch Hill Rd.
North Branford, CT 06471
(203) 315-2190
(203) 315-2196 (fax)
* info@ocfoundation.org
http://www.ocfoundation.org
1,2,3,4,5,6,7,8

OBSTRUCTIVE
HYDROCEPHALUS

See: Dandy-Walker Syndrome

OCULO-AURICULO-VERTEBRAL
SPECTRUM


See: Goldenhar Syndrome

OCULOCEREBRORENAL
SYNDROME

See: Lowe Syndrome

OCULODENTODIGITAL
SYNDROME, TYPE I & II

See: Ectodermal Dysplasias

OCULOOSTEOCUTANEOUS
SYNDROME

See: Ectodermal Dysplasias

ODONTOONYCHODERMAL
DYSPLASIA

See: Ectodermal Dysplasias

ODONTOONYCHOHYPO-HIDROTIC
DYSPLASIA

See: Ectodermal Dysplasias

ODONTOTRICHODYSPLASIA
WITH NEUTROPENIA

See: Ectodermal Dysplasias;
Neutropenia

ODONTOTRICHOMELIC
SYNDROME

See: Ectodermal Dysplasias

OLDFIELD SYNDROME

See: Colon Cancer, Hereditary;
Polyposis

OLIGOPHRENIA-MICROPHTHALMOS

See: Norrie Disease

OLIGOSACCHARIDOSES

See: Tay-Sachs Disease

OLLIER DISEASE

See also: Growth Disorders;
Maffucci Syndrome; Multiple
Hereditary Exostosis

Ollier/Maffuci Self-Help Group
Hermann Schmid, Vice President
74 Aitchison Rd.
Binghamton, NY 13905
* hschmid@stny.rr.com
olliers@aol.com
http://www.ollier-maffucci.org
1,4

ONDINE'S CURSE

See: Central Hypoventilation
Syndrome, Congenital

OPITZ FG SYNDROME

See: FG Syndrome

OPITZ HYPERTELORISM-HYPOSPADIUS
SYNDROME

See: Opitz Syndrome

OPITZ
OCULOGENITOLARYNGEAL
SYNDROME

See: Opitz Syndrome

OPITZ SYNDROME

Opitz G/BBB Family Network
PO Box 516
Grand Lake, CO 80447
(970) 627-8935 (phone/fax)
(970)627-8818 fax
* opitznet@mac.com
1,2,3,4,5,6,7,8,9

OPITZ-BBBG COMPOUND
SYNDROME

See: Opitz Syndrome

OPITZ-FRIAS SYNDROME

See: Opitz Syndrome

OPSOCLONUS-MYOCLONUS
SYNDROME

See also: Myoclonus

Opsoclonus-Myoclonus Support
Network
c/o Connie Quinn
725 North St.
Jim Thorpe, PA 18229
(717) 325-3302
* clquinn@ptd.net
http://www.geocities.com/
hotsprings/spa/2190
3

OPTIC NERVE HYPOPLASIA

See: Septo-Optic Dysplasia

ORBITAL HYPERTELORISM

See: Craniofacial Disorders

ORGANIC ACIDEMIA

See: Acidemia, Organic

ORNITHINE
TRANSCARBAMYLASE (OTC)
DEFICIENCY

See: Urea Cycle Disorders

OROFACIODIGITAL
SYNDROME, TYPE I

See: Ectodermal Dysplasias

OSLER-WEBER-RENDU
SYNDROME

See: Hemorrhagic
Telangiectasis, Hereditary

OSTEITIS FIBROSA
DISSEMINATA

See: McCune-Albright
Syndrome

OSTEOCHONDROMATOSIS

See: Exostoses, Multiple
Hereditary

OSTEOGENESIS IMPERFECTA

See also: Growth Disorders

Osteogenesis Imperfecta
Foundation
804 W. Diamond Ave., Ste. 210
Gaithersburg, MD 20878
(800) 981-2663
(301) 947-0083
(301) 947-0456 (fax)
* bonelink@oif.org
http://www.oif.org
1,2,3,4,5,6,7 Support groups;
Spanish materials

OSTOMY

United Ostomy Association, Inc.
19722 MacArthur Blvd.,
Ste. 200
Irvine, CA 92612
(800) 826-0826
(949) 660-8624
(949) 660-9262 (fax)
* uoa@deltanet.com
http://www.uoa.org
1,2,4,5,6,7

United Ostomy Association of
Canada, Inc
PO Box 825-Charles St. E
College Park PO
444 Yonge St.
Toronto, ON
CAN M4Y 2N7
(416) 595-5452
(416) 595-9924 (fax)
* uoacan@astral.magic.ca
http://www3.ns.sympatico.ca/
canada/ostomy
1,2,3,4,5,6,7,8,9 youth
network

OXALOSIS & HYPEROXALURIA

See also: Kidney Disorders

Oxalosis & Hyperoxaluria
Foundation
5727 Westcliffe Dr.
St. Louis, MO 63129
(618) 281-7540
(888) 721-2432
* ohf@ohf.ultranet.com
http://www.ohf.org
1,2,8

OXOPROLINURIA

See: Acidemia, Organic

PACHYGYRIA

See: Lissencephaly

PACHYONYCHIA, CONGENITAL

See: Ectodermal Dysplasias

PAGON SYNDROME

See: Hydrocephalus;
Lissencephaly

PALLISTER-HALL SYNDROME

See also: Anorectal
Malformations; Pituitary
Tumors

Pallister-Hall Foundation
Debra Messer RFD Box 3000,
Fairground Rd
Bradford, VT 05033
(802) 222-9683
* messer@sover.net
http://www.kumc.edu/gec/su
pport/palshall.html
2,3,4,9

PALLISTER-KILLIAN
SYNDROME

See also: Epilepsy
Pallister-Killian Family Support
Network
3700 Wyndale Ct.
Ft Worth, TX 76109
(817) 927-8854
(817) 927-2073 (fax)
3

PALMOPLANTAR
HYPERKERATOSIS AND
ALOPECIA

See: Ectodermal Dysplasias

PANCREATIC INSUFFICIENCY
WITH NEUTROPENIA

See: Shwachman Syndrome

PANCYTOPENIA, CONGENITAL

See: Anemia, Fanconi

PANHYPOPITUITARISM

See: Growth Disorders

PANMYELOPATHY

See: Anemia, Aplastic

PANMYELOPHTHISIS

See: Anemia, Aplastic

PAPILLOMAS

See: Respiratory
Papillomatosis, Recurrent

PAPILLON-LEFEVRE
SYNDROME

See: Ectodermal Dysplasias

PARALYSIS, PERIODIC

See: Muscular Dystrophy

PARALYTIC POLIO

See: Polio

PARAMYOTONIA CONGENITA

See: Muscular Dystrophy

PARKES-WEBER SYNDROME

See: Klippel-Trenaunay
Syndrome

PAROXYMSAL DYSKINESIAS

See: Dystonia

PARRY-ROMBERG SYNDROME

See: Craniofacial Disorders

PATIN SYNDROME

See: Fibrodysplasia Ossificans
Progressiva

PDD

See: Autism

PELIZAEUS-MERZBACHER
DISEASE

See also: Leukodystrophy

The PMD Foundation
333 Homestead Ave.
Haddonfield, NJ 08033
(856) 795-1539
(856) 396-0451 (fax)
* mlaprocido@pmdfoundation.
org
http://www.pmdfoundation.org

PEMPHIGUS, FAMILIAL

See: Ichthyosis

PEPCK DEFICIENCY

See: Lactic Acidosis;
Mitochondrial Disorders

PERIPHERAL NEUROPATHY

See: Charcot-Marie-Tooth
Disease

PERONEAL MUSCULAR
ATROPHY

See: Charcot-Marie-Tooth
Disease

PERVASIVE DEVELOPMENTAL
DISORDER (PDD)

See: Autism

PEUTZ-TOURAINE SYNDROME

See: Colon Cancer, Hereditary;
Polyposis

PFEIFFER SYNDROME

See: Craniofacial Disorders

PHAKOMATOSIS

See: Tuberous Sclerosis

PHENYLKETONURIA (PKU)

See also: Metabolic Disorders

Children's PKU Network
1520 State St., Ste. 111
San Diego, CA 92101
(619) 233-3202
(619) 233-0838 (fax)
* pkunetwork@aol.com
2,4,7 Spanish materials

National Coalition
for PKU & Allied Disorders
PO Box 1244
Mansfield, MA 02048
(877) 996-2723
http://www.pkuallieddisorders.org

National PKU News
c/o Virginia Schuett
6869 Woodlawn Ave. NE,
Ste. 116
Seattle, WA 98115-5469
(206) 525-8140
(206) 525-5023 (fax)
* schuett@pkunews.org
http://www.pkunews.org
1,3

PHOSPHOENOLPYRUVATE
CARBOXYKINASE DEFICIENCY

See: Lactic Acidosis;
Mitochondrial Disorders

PHOSPHOFRUCTO
KINASE DEFICIENCY

See:Glycogen Storage
Diseases; Muscular Dystrophy

PHOSPHOGLYCERATE
KINASE DEFICIENCY

See: Muscular Dystrophy

PHOSPHOGLYCERATE
MUTASE DEFICIENCY

See: Muscular Dystrophy

PHOSPHORYLASE B
KINASE DEFICIENCY

See: Glycogen Storage
Diseases; Muscular Dystrophy

PHOSPHORYLASE DEFICIENCY

See: Glycogen Storage
Diseases; Muscular Dystrophy

PIERRE ROBIN SYNDROME

See: Craniofacial Disorders;
Growth Disorders

PIGMENT DISORDERS

See: Albinism &
Hypopigmentation; Vitiligo

PILI TORTI AND ENAMEL
HYPOPLASIA

See: Ectodermal Dysplasias

PILI TORTI AND
ONYCHODYSPLASIA

See: Ectodermal Dysplasias

PITUITARY
DISORDERS/TUMORS

Pituitary Network Association
PO Box 1958
Thousand Oaks,CA 91358
(805) 496-4932
(805) 557-1161 (fax)
* pna@pituitary.org
http://www.pituitary.org
1,2,3,4,7,8

PITYRIASIS RUBRA PILARIS

See: Ichthyosis

POLIO

See also: Ventilator Use spinal
cord injured

Vaccine Associated Polio Society
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 by GINI
Joan L. Headley,
Executive Director
4207 Lindell Blvd., No. 110
Saint Louis, MO 63108
(314) 534-0475
(314) 534-5070 (fax)
* gini_intl@msn.com
http://www.post-polio.org
1,2

Gazette International Networking
Institute (GINI)
Joan L. Headley: Executive
Director
4207 Lindell Blvd No 110
Saint Louis, MO 63108
(314) 534-0475
(314) 534-5070 (fax)
* gini_intl@msn.com
http://www.post-polio.org
1,3

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; Colon
Cancer, Hereditary

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

The Children's Pompe Foundation
66 Witherspoon St, Ste 341
Princeton, NJ 08542
(609) 924-7192
(609) 767-2154 (fax)
* info@pompe.org
2,3,4,7,8

PORPHYRIA

American Porphyria Foundation
PO Box 22712
Houston, TX 77227
(713) 266-9617
(713) 871-1788 (fax)
* porphyrus@juno.com
http://www.porphyriafoundatio
n.com/
1,2,3,4,8

Canadian Porphyria
Foundation Inc.
Box 1206
Neepawa, MB
CAN ROJ 1H0
(204) 476-2800 (voice/fax)
* porphyria@cpf-inc.ca
http://www.cpf-inc.ca
1,2,7,9 French materials

PORT WINE STAINS

See: Sturge-Weber Syndrome

POST-POLIO

See: Polio

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/prad
er-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@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

PRIMARY IMMUNE DISORDER

See: Granulomatous Disease,
Chronic

PROGERIA

International Progeria Registry
c/o W. Ted Brown, MD, PhD
NY State Inst. for Basic Research
in Developmental Disabilities
1050 Forest Hill Rd.
Staten Island, NY 10314
(718) 494-5333
(718) 494-4835 (fax)
* wtbibr@aol.com
3,9

The Progeria Research
Foundation, Inc.
PO Box 3453
Peabody, MA 01961
(978) 535-2594
(978) 535-5849 (fax)
* progeria@netzero.com
http://www.progeriaresearch.org
1,2,8,9

PROGRESSIVE
HYPOERYTHEMIA

See: Anemia, Aplastic

PROGRESSIVE OSSEOUS
HETEROPLASIA

See: Connective Tissue
Disorders; Fibrodysplasia
Ossificans Progressiva

PROPINONYL-COA
CARBOXYLASE (PCC)

See: Acidemia, Organic

PROPIONIC ACIDEMIA

See: Acidemia, Organic

PROTEUS SYNDROME

See: Neurofibromatosis

PROTOCOPROPORPHYRIA

See: Liver Disorders; Porphyria

PROTOPORPHYRIA

See: Liver Disorders; Porphyria

PRUNE BELLY SYNDROME

Prune Belly Syndrome Network
100 UCLA Medical Plaza
Ste. 690
Los Angeles, CA 90095
(310) 825-6865
(310) 794-9962 (fax)
http://www.pedsuro.com
3,4

PSEUDO-HURLER
POLYDYSTROPHY

See: Mucopolysaccharidosis;
Tay-Sachs Disease

PSEUDOCHOLINESTERASE
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
STENOSIS

See: Heart Disorders

PURINE METABOLIC
DISORDERS

See also:autism

Purine Research Society
Tahma Metz: Executive Director
5424 Beech Ave.
Bethesda, MD 20814-1730
(301) 530-0354
(301) 564-9597 (fax)
* purine@erols.com
http://www2.dgsys.com/~purine/
2,4,8

PURPURA HEMORRHAGICA

See: Purpura, Idiopathic
Thrombocytopenia (ITP)

PURPURA, IDIOPATHIC
THROMBOCYTOPENIA (ITP)

ITP Society
Children's Blood Foundation
333 E. 38th St., Rm. 830
New York, NY 10016-2745
(800) 487-7010 (ITP Hotline)
(212) 297-4336 (office)
(212) 297-4340 (fax)
* cbf@nyp.org
http://www.ultranet.com
/~itpsoc
2

PYRIMIDINE METABOLIC
DISORDERS

See: Purine Metabolic
Disorders

PYROGLUTAMICACIDURIA

See: Acidemia, Organic

PYRROLORPHYRIA

See: Porphyria

PYRUVATE CARBOXYLASE
DEFICIENCY

See: Acidemia, Organic; Lactic
Acidosis

PYRUVATE DEHYDROGENASE
DEFICIENCY

See: Acidemia, Organic; Lactic
Acidosis

PYRUVATE DEHYDROGENASE
PHOSPHATASE

See: Lactic Acidosis

Q-T PROLONGATION

See: Long Q-T Syndrome

RAPP-HODGKINS SYNDROME

See also: Cleft Palate;
Craniofacial Disorders; Deaf-Blind;
Ectodermal Dysplasias;
Hearing Impairments; Visual
Impairments

RARE DISORDERS

See: Genetic Disorders

RASMUSSEN ENCEPHALITIS

See: Rasmussen Syndrome

RASMUSSEN SYNDROME

See also: Epilepsy; Seizure
Disorders

Rasmussen's Syndrome and
Hemispherectomy Support
Network
Lynn/Al Miller: co-founders
8235 Lethbridge Rd.
Millersville, MD 21108
(410) 987-5221 (voice)
* rssnlynn@aol.com
1,4,6

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
60 St Claire Ave East St 703
Toronto, ON CAN M4T-1N5
(800) 461-3331 (Canada only)
(416) 360-4200
(416) 360-0060 (fax)
1,2,3,5,7,8 French materials

The Foundation Fighting
Blindness
Mitsy Palmer: Constituent
Services Coordinator &
Edy Asbell: Constituent Services
Representative
11435 Cronhill Dr.
Owings Mill, MD 211117-2220
(888) 394-3937
(800) 683-5551 (Toll Free TDD)
(410) 568-0150
(410) 363-7139 (local TDD)
(410) 363-2393 (fax)
* info@blindness.org
http://www.blindness.org
1,2,3,4,5,6,8,9 young adult
program, retina donor program

RETINOBLASTOMA

See also: Cancer; Visual
Impairments

National Retinoblastoma Parent
Group
PO Box 317
Watertown, MA 02471
(800) 562-6265
(617) 972-7444 (fax)
1,2,3,4,57

RETINOCEREBRAL
ANGIOMATOSIS

See: Von Hippel-Lindau
Syndrome

RETT SYNDROME

International Rett Syndrome
Association
Kathy Hunter Parent: Founder
and President
9121 Piscataway Rd.
Clinton, MD 20735
(301) 856-3334
(301) 856-3336 (fax)
* khunter@rettsyndrome.org
http://www.rettsyndrome.org
1,2,3,4,67,8

Ontario Rett Syndrome
Association
147 Westdale Rd.
Oakville, ON CAN L6L 4Z7
(905) 844-7673
(905) 884-8730 (fax)
* rettsyndromeontario@home.
com
http://members.home.net/rettsy
ndromeontario
1,2,3,4,5,6,8

Rett Syndrome Research
Foundation
4600 Devitt Dr,
Cincinnati, OH 45246
(513) 874-3020
(513) 874-2520 (fax)
http://www.rsrf.org
1,8,9

REYE SYNDROME

See: Fatty Oxidation Disorder

RILEY-DAY SYNDROME

See: Familial Dysautonomia

RING CHROMOSOME 15

See: Chromosome Deletions;
Craniofacial Disorders;
Epilepsy; Heart Disorders;
Kidney Disorders; Limb
Disorders; Scoliosis

RING CHROMOSOME 18

See: Chromosome 13 & 18
Disorders; Chromosome 18
Disorders; Chromosome
Deletions; Craniofacial
Disorders; Deaf-Blind; Hearing
Impairments; Visual
Impairments

RING CHROMOSOME 21

See: Chromosome Deletions

RING CHROMOSOME 22

See: Chromosome Deletions

RING CHROMOSOME 4

See: Chromosome Deletions;
Wolf-Hirschhorn Syndrome

RING CHROMOSOME 9

See: Chromosome Deletions;
Craniofacial Disorders

ROBINOW SYNDROME

See also: Craniofacial
Disorders; Short Stature

Robinow Syndrome Foundation
c/o Karla M. Kruger
PO Box 1072
Anoka, MN 55303
(763) 434-1152
(763) 434-3691 (fax)
* kmkruger@qwest.net
http://www.Robinow.org
1,3,6

ROBINSON SYNDROME

See: Ectodermal Dysplasias

ROMANO-WARD SYNDROME

See: Long Q-T Syndrome

ROSAI-DORFMAN DISEASE

See: Histiocytosis

ROSSELI-GULIENETTI
SYNDROME

See: Ectodermal Dysplasias

ROTHMUND-THOMPSON'S
SYNDROME

See: Ectodermal Dysplasias

RSH SYNDROME

See: Smith-Lemli-Opitz
Syndrome

RUBINSTEIN SYNDROME

See: Rubinstein-Taybi
Syndrome

RUBINSTEIN-TAYBI SYNDROME

See also: Craniofacial
Disorders; Heart Disorders

Rubinstein-Taybi Parent Group
c/o Lorrie Baxter
PO Box 146
Smith Center, KS 66967
(888) 447-2989
(785) 697-2989
(785) 697-2985 (fax)
* lbaxter@ruraltel.net
http://www.rubinstein-taybi.org
1,2,3,9

RUSSELL SYNDROME

See: Russell-Silver Syndrome

RUSSELL-SILVER SYNDROME

See also: Growth Disorders;
Short Stature

The Magic Foundation Russell-Silver
Support Group
1327 N. Harlem Ave.
Oak Park, IL 60302
(800) 3-Magic-3 (362-4423)
(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 Foundation, Inc.
12 Kent Way, Ste. 101
Byfield, MA 01915
(800) 722-HOPE (4673)
(978) 463-5843
(978) 463-5809 (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

SCOLIOSIS

National Scoliosis Foundation
5 Cabot Pl.
Stoughton, MA 02072
(800) NSF-MYBACK (673-6922)
(781) 341-6333
(781) 341-8333 (fax)
* NSF@scoliosis.org
http://www.scoliosis.org
1,2,3,4,5,6,7

SECKEL SYNDROME
See: Craniofacial Disorders;
Growth Disorders

SEIZURE DISORDERS
See also: Epilepsy

THRESHOLD--Intractable Seizure
Disorder Support Group &
Newsletter
Epilepsy Foundation of NJ
Lion Head Office Park., Ste. 8A
35 Beaverson Blvd.
Brick, NJ 08723
(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
2453 Emerald St.
San Diego, CA 92109
(866) FOCUS50 (362-8750)
(858) 273-1473
* support@focusfamilies.org
http://www.focusfamilies.org
1,2,3,4,6,8,9 Affiliated
organizations in Italy and France

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 65030
Lubbock, TX 79464-5030
(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, Intl.
c/o Nancy Ruick
5195 Hampsted Village Center
Way, PMB # 162
New Albany, OH 43054-8331
1-877-SDS INTL(737-4685)
(614) 939-0752 (fax)
* 4SSkids@shwachmandiamond.org
http://www.shwachmandiamond.org
1,2,3,4,6,8 French/Italian/
Dutch materials

SHWACHMAN-DIAMOND
SYNDROME
See: Shwachman Syndrome

SHY-DRAGER/MULTIPLE
SYSTEM ATROPHIES
See also: Dysautonomia

Shy-Drager Syndrome MSA
Support Group
2004 Howard Ln.
Austin, TX 78728
(866) 737-4999
(512) 251-3315 (fax)
http://www.shy-drager.com

SIALIDOSIS
See: Mucopolysaccharidosis;
Tay-Sachs Disease

SIALOLIPIDOSIS
See: Mucolipidosis Type IV

SICKLE CELL ANEMIA
See: Sickle Cell Disease

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

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)
* scda@sicklecelldisease.org
http://www.sicklecelldisease.org
1,2,3,4,5,6,8,9

Sickle Cell Disease Association of
the Piedmont
PO Box 20964
Greensboro, NC 27420
(800) 733-8297
(336) 274-1507
(336) 275-4251 (fax)
* scdap@aol.com
http://www.scdap.org
1,2,3,4,5,6,7

SIDS
See: Sudden Infant Death
Syndrome (SIDS)

SILVER SYNDROME
See: Russell-Silver Syndrome

SILVER-RUSSELL SYNDROME
See: Russell-Silver Syndrome

SIMPSON-GOLABI-BEHMEL
SYNDROME
See: Beckwith-Wiedermann
Syndrome

SKELETAL ANOMALIES
See: Ectodermal Dysplasias

SKELETAL DYSPLASIA
See: Dwarfism; Growth
Disorders; Short Stature

SLEEP APNEA
See: Apnea, Sleep

SLD
See: Dyslexia

SLO SYNDROME
See: Smith-Lemli-Opitz
Syndrome

SLY SYNDROME
See: Mucopolysaccharidosis;
Tay-Sachs Disease

SMITH-LEMLI-OPITZ
SYNDROME
See: Craniofacial Disorders

Smith-Lemli-Opitz (RSH)
Advocacy & Exchange
2650 Valley Forge Dr.
Boothwyn PA 19061
(610) 485-9663
(419) 781-3317 (fax)
* bhook@erols.com
http://www.members.aol.com/sl
o97/index.html
1,2,3,6,9

SMITH-MAGENIS SYNDROME

PRISMS (Parents and Researchers
Interested in Smith-Magenis
Syndrome)
Connie Bessette: President
76 South New Boston Rd.
Francestown, NH 03043-3511
(603) 547-8384
(603) 547-3043 (fax)
* info@smithmagenis.org
http://www.smithmagenis.org
1,2,3,4,5

SOTOS SYNDROME
See also: Growth Disorders

Sotos Syndrome USA Support
Association
3 Danada Sq. E.
PMB #235
Wheaton, IL 60187
(888) 246-SSSA (7772)
(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: 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
Spinal Cord Injuries

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
#997-167 Lombard Ave,
Winnipeg, MB
CAN R3B 0V6
(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,
Spinal Cord Injury, Spina
Bifida, Multiple Sclerosis,
Stroke, Cerebral Palsy,
Amyotrophic Lateral Sclerosis
(ALS), Post-Polio Syndrome,
Traumatic Brain Injury (TBI)

Christopher and Dana Reeve
Paralysis Resource Center
636 Morris Turnpike, Ste 3A
Short Hills, NJ 07078
(800) 539-7309
(973) 467-8270
(973) 467-9845 (fax)
* prc@crpf.org
http://www.paralysis.org
2,9

National Spinal Cord Injury
Association
6701 Democracy Blvd.,Ste. 300-9
Bethesda, MD 20817
(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

SPINAL MUSCULAR ATROPHY

Families of SMA
PO Box 196
Libertyville, IL 60048-0196
(800) 886-1762
(847) 367-7620
(847) 367-7623 (fax)
* info@fsma.org
http://www.fsma.org
1,2,3,4,5,6,7,8,9 Spanish
materials

Muscular Dystrophy Association
Bob Mackle, Director of Public
Information
3300 E. Sunrise Dr
Tucson, AZ 85718-3208
(800) 572-1717
(520) 529-5300 (fax)
* mda@mdausa.org
http://www.mdausa.org
http://www.mdaenespanol.org
2,3,4,5,8,9,

Muscular Dystrophy Family
Foundation, Inc.
2330 N. Meridian St.
Indianapolis, IN 46208-5730
(800) 544-1213
(317) 923-MDFF (6333)
* mdff@mdff.org
http://www.mdff.org

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
See: Menkes Disease

STENGEL SYNDROME
See: Batten Disease

STENGEL-BATTEN-MAYOU-SPIELMEYER-VOGT
DISEASE
See: Batten Disease

STICKLER SYNDROME

Stickler Involved People (SIP)
15 Angelina Dr.
Augusta, KS 67010
(316) 775-2993
http://www.stickler.org
* sip@sticklers.org
1,2,3,6

STROKE
See also: Aphasia, Acquired;
Heart Disorders; Spinal Cord
Injuries

National Stroke Association
9707 E. Easter Ln.
Englewood, CO 80112-5112
(800) 787-6537
(303) 649-9299
(303) 649-1328 (fax)
* info@stroke.org
http://www.stroke.org
1,2,5,6,7,8 Spanish/French
materials

Heart and Stroke Foundation
of Canada
222 Queen St. Ste 1402
Ottawa, ON
CAN K1P 5V9
(613) 569-4361
(888) HSF-INFO (473-4636)
(613) 569-3278 (fax)
http://www.heartandstroke.ca
http://www.fmcoeur.ca
2,4,5,7,8

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

STURGE-WEBER SYNDROME
See also: Craniofacial
Disorders; Epilepsy; Glaucoma;
Klippel-Trenaunay Syndrome;
Nevi, Giant Congenital;
Neurofibromatosis; Tuberous
Sclerosis; Von Hippel-Lindau
Syndrome

Sturge-Weber Foundation
Carol Buck, VP, Admin Research
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
1,4,6; online support group

Sturge-Weber Foundation
(Canada) Inc
1960 Prairie Ave.
Port Coquitlam, BC
CAN V3B 1V4
(604) 942-9209
(604) 942-6429 (fax)
* kmoore@axionet.com
http://www.inforamp.net/
~cvs0590
1,2,3,4,6,7,8,9

STUTTERING

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)
* stutter@stutteringhelp.org
http://www.stutteringhelp.org
2,4,6; Spanish materials

SUBACUTE NECROTIZING
ENCEPHALOPATHY
See: Mitochondrial Disorders

SUBACUTE SCLEROSING
PANENCEPHALITIS
See also: Epilepsy; Visual
Impairments

National Institute
of Neurological Disorders &
Stroke (NINDS)
PO Box 5801
Bethesda, MD 20824
(800) 352-9424
(301) 496-5751
(301) 402-2186 (fax)
* braininfo@ninds.nih.gov
http://www.ninds.nih.gov

National Organization for Rare
Disorders (NORD).
55 Kenosia Ave.
Danbury, CT 06810
(800) 999-6673
(203) 744-0100
(203) 797-9590 (TDD)
(203) 798-2291 (fax)
* orphan@rarediseases.org
http://www.rarediseases.org
1,2,3,4,6,7,8

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
1,2,3,4,5,6,7,8 French/
English materials

National Sudden Infant Death
Syndrome Resource Center
2070 Chain Bridge Rd., Ste. 450
Vienna, VA 22182
(703) 821-8955
(703) 821-2098 (fax)
* sids@sidscenter.org
http://www.sidscenter.org
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)
* info@asap4sm.org
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
Brighton, MA 02135
(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
410 Stuart St..
Boston, MA 02116
(800) 832-8321
(617) 534-1515 (fax)
* info@allthyroid.org
http://www.tfa.org
1,2,5,8

Thyroid Foundation of Canada
PO Box/CP 1919 STN Main,
Kingston, ON
CAN K7L 5J7
(613) 544-8364-
(800) 267-8822 (In Canada)
(613) 544-9731 (fax)
* thyroid@kos.net
http://www.thyroid.ca
1,2,3,7,8

TOOTH AND NAIL SYNDROME
See: Ectodermal Dysplasias

TORSION DYSTONIA, IDIOPATHIC
See: Dystonia

TOURETTE SYNDROME
See also: Attention Deficit
Disorder; Obsessive-Compulsive
Disorder

Tourette Syndrome Association
Judit Ungar, President
42-40 Bell Blvd.
Bayside, NY 11361-2820
(718) 224-2999
(718) 279-9596 (fax)
* ts@tsa-usa.org
http://www.tsa-usa.org
2,4,5,8,9

Tourette Syndrome Foundation
of Canada
#206, 194 Jarvis St.
Toronto, ON
CAN M5B 2B7
(800) 361-3120 (Canada only)
(416) 861-8398
(416) 861-2472 (fax)
* tsfc.org@tourette.ca
http://www.tourette.ca
1,2,3,4,5,6,7,8 to a very small
degree.; school in-servicing
program; print material in French
and English; kids' programs

TOXIC PARALYTIC ANEMIA
See: Anemia, Aplastic

TREACHER COLLINS
SYNDROME
See also: Craniofacial
Disorders; Hearing
Impairments

Treacher Collins Foundation
PO Box 683
Norwich, VT 05055-0683
(802) 649-3050
* hopecharkins@hotmail.com
http://www.treachercollinsfnd.org
1,2,3,4,6

TREMOR

International Essential Tremor
Foundation
Catherine S. Rice, Executive
Director
PO Box 14005
Lenexa, KS 66285-4005
(913) 341-3880
(913) 341-1296 (fax)
* staff@essentialtremor.org
http://www.essentialtremor.org
2,9,

TRICHODENTOOSSEOUS
SYNDROME: TYPES I, II & III
See: Ectodermal Dysplasias

TRICHODYSPLASIA-
ONYCHOGRYPOSIS-
HYPOHIDROSIS-CATARACT
See: Ectodermal Dysplasias

TRICHOFAClOHYPOHIDROTIC
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

TRISOMY 13
See: Chromosome 13 & 18
Disorders

TRISOMY 18
See: Chromosome 13 & 18
Disorders

TRP
(TRICHORHINOPHALANGEAL)
SYNDROME, TYPES I & II
See: Ectodermal Dysplasias

TUBEROUS SCLEROSIS
See also: Autism; Epilepsy;
Learning Disabilities

Tuberous Sclerosis Alliance
801 Roeder Rd, Ste. 750
Silver Spring, MD 20910
(800) 225-6872
(301) 562-9890
(301) 562-9870 (fax)
* tsalliance@tsalliance.org
http://www.tsalliance.org
1,2,3,6,8 National volunteer
support network

Tuberous Sclerosis Canada
Sclerose Tubereuse
2443 New Wood Dr.
Oakville, ON CAN L6H 5Y3
(800) 347-0252
(905) 257-1997
(905) 257-4778 (fax)
* info@tscst.org
http://www.tscst.org
1,2,3,4,7,8

TURCOT SYNDROME
See: Brain Tumors; Cancer
Hereditary Colon Cancer

TURNER SYNDROME
See also: Growth Disorders

Turner Syndrome Society
of Canada
814 Glencairn Ave.
Toronto, ON
CAN M6B 2A3
(800) 465-6744
(416) 781-2086
(416) 781-7245 (fax)
* tssincan@web.net
http://www.turnersyndrome.ca
1,2,3,4,5,6; French materials

Turner Syndrome Society
of the US
14450 TC Jester, Ste. 260
Houston, TX 77014
(800) 365-9944
(832) 249-9988
(832) 249-9987 (fax)
* shel@turner-syndrome-us.org
http://www.turner-syndromeus.org
1,2,3,4,5,6,9 Spanish materials

TWIN-RELATED DISEASES

Twin Hope
Twin Hope, Inc. Northern Office
2592 West 14th St.
Cleveland, Ohio 44113
Twin Hope, Inc. Southern Office
3837 Barbara Ann Blvd.
Crestwood, KY 40014
(502) 243-2110
(Twin Hope 24 hour hotline)
(859) 879-9120
(Twin Hope 24 hour hotline)
* twinhope@twinhope.com
http://www.twinhope.com
1,2,3,4,5,7,8,9 Spanish,
German, and French materials:
family guides

TWIN TO TWIN
TRANSFUSION SYNDROME
See also: Twin-Related
Diseases; Cerebral Palsy;
Learning Disabilities

Twin to Twin Transfusion
Syndrome Foundation
Mary Slaman-Forsy: Founder
and President
411 Longbeach Parkway
Bay Village, OH 44140
(800) 815-9211
(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,
TYROSYLURIA
See also: Kidney Disorders;
Liver Disorders

Groupe Aide aux Enfants
Tyrosinemiques du Quebec
Gerard Tremblay, President
3162, Rue Granville
Jonquiere, QC CAN G7S 2B9
(418) 548-1580
* gerard.tremblay@sympatico.ca
http://www.cegepchicoutimi.qc.ca/gaetq/
1,6,9

ULCERATIVE COLITIS
See: Crohn Disease & Colitis

UREA CYCLE DISORDERS
See also: Metabolic Disorders

National Urea Cycle Disorders
Foundation
4841 Hill St.
La Canada, CA 91011
(800) 386-8233
* info@nucdf.org
http://www.nucdf.org
1,2,3,4,5,7,8,9

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)
* info@tefvater.org
http://www.tefvater.org
1,2,3,7,8,9

VAN MEERKEREN I
SYNDROME
See: Ehlers-Danlos Syndrome

VASCULAR MALFORMATIONS
See: Klippel-Trenaunay
Syndrome; Sturge-Weber
Syndrome; Von Hippel-Lindau
Syndrome

VATER ASSOCIATION
See: VACTERL Association

VELO-CARDIO-FACIAL
SYNDROME
See also: CHARGE
Association; Craniofacial
Disorders; Heart Disorders

Northeast VCFS Support Group
2 Lansing Dr.
Salem, NH 03079
(603) 898-6332
* MLADJA@aol.com
1,2,3,6,9 International
educational foundation for
research.

Velo-Cardio-Facial Syndrome
Educational Foundation, Inc.
Upstate Medical University
University Hospital
708 Jacobsen Hall (C.D.U.)
750 E. Adams St.
Syracuse, NY 13210
(315) 464-6590
(315) 464-6593
* vcfsef@mail.upstate.edu
http://www.vcfsef.org
http://www.vcfs.org/
2,3,4,9

VENTILATOR USE
See also: Spinal Cord Injury,
SMA, Polio

Citizens for Independence in
Living & Breathing
78 Golfwood Heights
Toronto, ON
CAN M9P 3M2
(416) 244-2248 (phone/fax)
2,3,4,5,7,9

International Ventilator Users
Network by GINI
(IVUN)
Judith Fischer, Editor, IVUN News
Joan L. Headley, Executive
Director, Gazette International
Network Institute (GINI)
4207 Lindell Blvd,# 110
St Louis, MO 63108-2915
(314) 534-0475
(314) 534-5070 (fax)
* gini_intl@msn.com
http://www.post-polio.org/ivun
1

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) 229-7705
(503) 229-8064 (fax)
* veda@vestibular.org
http://www.vestibular.org
1,2,3,4; Spanish materials

VISUAL IMPAIRMENT/
HEARING IMPAIRMENT
See: Deaf-Blind

VISUAL IMPAIRMENTS
See also: Albinism &
Hypopigmentation; Glaucoma;
Macular Diseases; Retinitis
Pigmentosa; Retinoblastoma;
Septo-Optic Dysplasia; Usher
Syndrome, Deaf-Blind

American Council of the Blind
Charles Crawford, Executive
Director
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
2,4,7

American Foundation
for the Blind
11 Penn Plaza, Ste. 300
New York, NY 10001
(800) 232-5463
(212) 502-7600
(212) 502-7777 (fax)
(212) 502-7662 (TDD)
* afbinfo@afb.org
http://www.afb.org
1,2,4,5,6,8

Blind Children's Center
4120 Marathon St.
Los Angeles, CA 90029
(800) 222-3566
(800) 222-3567 (CA only)
(323) 664-2153
(323) 665-3828 (fax)
* info@blindchildrenscenter.org
http://www.blindchildrenscenter
.org
1,2,3,4,8 Spanish materials

Blind Children's Fund
311 W. Broadway Ste 1
Mt. Pleasant, MI 48858
(989) 779-9966
(989) 779-0015 (fax)
* bcsf@blindchfnd.org
http://www.blindchildrensfund.
org
1,2,4,6

Braille Institute
741 N. Vermont Ave.
Los Angeles, CA 90029
(323) 663-1111
(323) 663-0867 (fax)
* info@brailleinstitute.org
http://www.brailleinstitute.org

Canadian National Institute
for the Blind
1929 Bayview Ave.
Toronto, ON
CAN M4G 3E8
(416) 486-2500
(416) 480-7417 (TDD)
(416) 480-7677 (fax)
* marjerb@east.cnib.ca
http://www.cnib.ca
1,2,3,4,6,7,8 French materials

Council of Families with
Vision Impairment
6212 W. Franklin St.
Richmond, VA 23226
(804) 288-0395
1,2,3,4,6,7

The Foundation for Fighting
Blindness
Mitsy Palmer, Constituent
Service Coordinator
11435 Cranhill Dr.
Owings Mill, MD, 21117-2220
(800) 683-5555
(800) 683-5551(TDD)
(410) 363-2393 (fax)
* info@blindness.org
http://www.blindness.org
1,2,4,6,9

National Center for Vision Child
Development (Lighthouse Int'l)
Cheryl L. Heide,
Administrative Assistant
111 E. 59th St.
New York, NY 10022-1202
(800) 829-0500
(212) 821-9784 (fax)
(212) 821-9713 (TDD)
* envision@lighthouse.org
http://www.lighthouse.org
1,2,9

National Association for Parents
of Children with Visual
Impairments
PO Box 317
Watertown, MA 02471
(800) 562-6265
(617) 972-7441
(617) 972-7444 (fax)
* napvi@perkins.pvt.k12.ma.us
http://www.spedex.com/napvi
1,2,3,5,6,7 Spanish materials

National Association for
Visually Handicapped
22 W 21st St., 6th Fl.
New York, NY 10010
(212) 889-3141
(212) 727-2931 (fax)
* staff@navh.org
http://www.navh.org
1,2,4,7 Spanish/Russian/
Mandarin materials; large-print
lending library

National Braille Press
88 St. Stephen St.
Boston, MA 02115
(888) 965-8965
(617) 266-6160
(617) 437-0456 (fax)
* orders@nbp.org
http://www.nbp.org
1,2,7

National Organization of
Parents of Blind Children
National Center for the Blind
1800 Johnson St.
Baltimore, MD 21230
(410) 659-9314 x360
(410) 685-5653 (fax)
* nfb@nfb.org
http://www.nfb.org
1,2,3,4,5,6,7 Spanish materials

Prevent Blindness America
500 E Remington Rd.
Schaumburg, IL 60173-4557
(800) 331-2020
(847) 843-2020
(847) 843-8458 (fax)
* info@preventblindness.org
http://www.preventblindness.
org
1,2,4,5,6,7,8 Spanish materials

Recording for the Blind
& Dyslexic
20 Roszel Rd.
Princeton, NJ 08540
(609) 520-8079
(800) 221-4797
(609) 520-7990 (fax)
* info@rfbd.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

National Vitiligo Foundation
611 S 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
DISEASE
See: Neurofibromatosis

VON WILLEBRAND DISEASE
See: Hemophilia

VROLIK DISEASE, TYPE II
See: Osteogenesis Imperfecta

WAGR SYNDROME
See also: Aniridia;
Wilm's Tumor

The WAGR Network
c/oAnnie Prusakiewicz
2063 Regina Ave
Lincoln Park, MI 48146
(313) 381-4302
* ReachingOutNet@aol.com
http://www.wagr.org
http://members.aol.com/Reachi
ngOutNet/index.htm.
1,2,3,6,9

WALBAUM-DEHEANE-
SCHLEMMER SYNDROME
See: Ectodermal Dysplasias

WALKER-WARBURG
SYNDROME
See: Hydrocephalus;
Lissencephaly

WARBURG SYNDROME
See: Hydrocephalus;
Lissencephaly

WEBER SYNDROME
See:Sturge-Weber Syndrome

WEGENER'S
GRANULOMATOSIS
See also: Immune Disorders

Wegener's Granulomatosis
Association (International)
PO Box 28660
Kansas City, MO 64188-8660
(800) 277-9474
(816) 436-8211 (fax)
* wgsg@wgassociation.org
http://www.wgassociation.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

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

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) 244-2229
(800) 806-1871
(248) 244-2230 (fax)
* TMonkaba@
williams-syndrome.org
http://www.williams-syndrome.org
1,2,3,4,5,6,8,9 DNA research
bank, annual music camp

Williams Syndrome Foundation
University of California
Irvine, CA 92679-2310
(949) 824-7259
* hlenhoff@uci.edu
http://www.williamssyndrome.org

WILLIAMS-BEUREN
SYNDROME
See: Williams Syndrome

WILM'S TUMOR
See: WAGR Syndrome,
Genitalia, Ambiguous

WILSON'S DISEASE

Wilson's Disease Association
Dr. A Sellner, President
4 Navaho Dr.
Brookfield, CT 06804-3124
(800) 399-0266
(203) 775-9666 (phone/fax)
* hasellner@worldnet.att.net
http://www.wilsonsdisease.org
1,2,7,8

WISKOTT-ALDRICH SYNDROME
See: Immune Disorders;
Purpura, Idiopathic
Thrombocytopenia

WOLF SYNDROME
See: Wolf-Hirschhorn
Syndrome

WOLF-HIRSCHHORN
SYNDROME
See also: Chromosome 4p-

4p- Support Group
C/o Kathy Sjodin
542 79th Ave. NE Ave
Spring Lake Park, FL, 55432
(763) 780-3311
* kssjodin@aol.com
http://4p-supportgroup.org
1,2,3,6,9

X-LINKED ALPHA
THALASSEMIA
See: Alpha Thalassemia
Mental Retardation
Syndrome, X-linked

X-LINKED COPPER DEFICIENCY
See: Menkes Disease

X-LINKED COPPER
MALABSORPTION
See: Menkes Disease

X-LINKED MYOTUBULAR
MYOPATHY
See: Myotubular Myopathy, X-Linked;
Muscular Dystrophy

XANTHOGRANULOMATOSIS,
JUVENILE
See: Histiocytosis

XERODERMA PIGMENTOSUM

Canadian Organization of Rare
Disorders (CORD)
PO Box 814
Coaldale, AB
CAN T1M 1M7
(877) 702-7273
(403) 345-4544
(403) 345-3948 (fax)
office@cord.ca
http://www.cord.ca
1,2,3,4

XP Society
PO Box 4759
Poughkeepsie, NY 12602
(877) 977-2873 (US only)
(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

KEY TO SERVICES

1 Periodical/newsletter
2 Informational materials
3 Networking/matching
4 Referrals to local resources
5 Local chapters
6 National conferences
7 Maintain research registry
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Publication:The Exceptional Parent
Article Type:Directory
Geographic Code:1USA
Date:Jan 1, 2003
Words:18407
Previous Article:EP communications: empowering parents and educating physicians. (From The President).
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