This page will give information on national organizations for children
with specific disorders or diseases. It will provide addresses, email addresses,
and web sites when available.
For information on different birth disorders and to search for a particular disorder go to:
Birth Disorder Information Directory
Achondroplasia (also see Little People, Dwarfism)
Little People's Research Fund
80 Sister Pierre Drive
Towson, MD 21204
(800) 232-5773
(410) 494-0055
(410) 494-0062 (fax)
Human Growth Foundation
7777 Leesburg Pike
Suite 202 S
Falls Church, VA 22043
(800) 232-5773
(703) 883-1773
(703) 883-1776 (fax)
www.genetic.org/hgf
hgfound@erols.com
Magic Foundation for Children's Growth
1327 N. Harlem Drive
Oak PArk, IL 60302
(800) 362-4423
(708) 383-0808 (fax)
www.magicfoundation.org
mary@magicfoundation.org
Angleman Syndrome
Angelman Syndrome Foundation
414 Plaza Dr. Suite 209
Westmont, IL 60559-5507
www-chem.ucsd.edu/asf
Canadian Angelman Syndrome Society
P.O. Box 37
Priddis, AB CAN TOL 1WO
(403) 931-2415
caff@cadvision.com
Apert Syndrome
Apert Support and Information Network
P.O. Box 1184
Fair Oaks, Ca 95628
(650) 961-1092
apertnet@ix.netcom.com
Apert Syndrome Pen Pal Network
P.O. Box 115
Providence, RI 02901
(401) 421-9076
Apert Syndrome Support Group
8708 Kathy Street
St. Louis, MO 63126
(314) 965-3356
Arnold-Chiari Malformation
Arnold-Chiari Family Network
c/o Maureen and Kevin Walsh
67 Spring Street
Weymouth, MA 02188
(617) 337-2368
Arthrogryposis Multiplex Congenita
Avenues: A National Support Group for Arthrogryposis
Multiplex Congenita
P.O. Box 5192
Sonara, CA 95370
(209) 928-3688
www.sonnet.com/avenues
Avenues@sonara.com
Becker Muscular Dystrophy
-see Muscular Dystrophy
Beckwith-Wiedemann Syndrome
Beckwidth-Wiedemann Support Network
3206 Braeburn Cir.
Ann Arbor. MI 48108
(800) 837-2976
(734) 973-0263
(734) 973-9721 (fax)
A800BWSN@aol.com
Brachial Plexus Injury
- see Erb's Palsy
Brittle Bone Disease
- see Osteogenesis Imperfecta
Broad Thumb-Hallux Syndrome
-see Rubinstein-Taybi Syndrome
Cerebral Palsy
United Cerebral Palsy Associations
1660 L St., NW, Ste. 700
Washington, D.C. 20036-5602
(800) 872-5827
(202) 776-0406
(202) 973-7197 (TTY)
(202) 776-0414 (fax)
www.ucpa.org
ucpainc@aol.com
Ontario Federation for Cerebral Palsy
1630 Lawrence Avenue W.
Ste. 104
Toronto, ON CAN M6L 1C5
(416) 244-8003
(416) 244-6543 (fax)
www.ofcp.on.ca
ofcp@ofcp.on.ca
Charcot-Marie-Tooth Disease
Charcot-Marie-Tooth Association
601 Upland Ave
Upland, PA 19015
(800) 606-2682
(610) 499-7486
(610) 499-7487 (fax)
www.charcot-marie-tooth.org
cmfassoc@aol.com
Charcot-Marie-Tooth International
1 Springbank Dr.
St. Catharines, ON CAN L2S 2K1
(905) 687-3630
(905) 687-8753 (fax)
www.cmtint.org
cmtint@vaxxine.com
Charge Syndrome
CHARGE Syndrome Foundation
2004 Parkade Blvd.
Columbia, MO 65202-3121
(800) 442-7604
(573) 499-4694 (fax)
www.chargesyndrome.org
marion@chargesyndrome.org
Connective Tissue Disorders
Coalition for Heritable Disorders of Connective
Tissue
382 Main Street
Port Washington, N.Y. 11050
(800) 862-7326
(516) 883-8712
(516) 883-8040 (fax)
www.marfan.org
staff@marfan.org
Dejerine Sottas Disease
- please see Muscular Dystrophy
Down Syndrome
Special Olympics
National Down Syndrome Society
686 Broadway, 8th Floor
New York, N.Y. 10012-2317
(800) 221-4602
(212) 460-9330
(212) 979-2873(fax)
www.ndss.org
info@ndss.org
Association for Children with Down Syndrome
2616 Martin Ave
Bellmore, NY 11710
(516) 221-4700
(516) 221-5867 (fax)
Canadian Down Syndrome Society
811 14 st. NW
Calgary, AB CAN T2N 2A4
(403) 270-8500
(403) 270-8291 (fax)
http://www.cdss.ca/
dsinfo@cdss.ca
Dubowitz Syndrome
Symptoms and Self Assessment Test
Dubowitz Syndrome Parent Support Network
P.O. Box 2441
Vincennes, IN 47591
(812) 886-0575
(812) 886-1128 (fax)
inattic@aol.com
Duchenne Muscular Dystrophy
- see Muscular Dystrophy
Dwarfism
Dysostosis, Metaphyseal, Type
B IV
- Scwachman Syndrome
Dystonia
Dystonia Medical Research Foundation
One E. Wacker Dr.
Ste. 2430
Chicago, IL 60601-1905
(312) 755-0198
(312) 803-0138 (fax)
www.dystonia-foundation.org
Dystonia Medical Research Foundation - Canada
116-230 Heath St. W.
Toronto, ON CAN M5P 1N8
(800) 361-8061 (canada only)
(416) 487-8326
email :dystfdtn@aol.com
Eaton-Lambert Syndrome
-see Muscular Dystrophy
Ehlers-Danlos Syndrome
- see also: Connective
Tissue Disorders, Glaucoma, Visual Impairments
Ehlers-Danlos National Foundation
6399 Wilshire Blvd. #510
Los Angeles, CA 90048
(213) 651-3038
(213) 651-1366 (fax)
http://www.ednf.org/
email: EDNFBoard@aol.com
Ellis-Van Creveld Syndrome
- see Ectodermal Dysplasias
EMG Syndrome
- see Beckwidth-Wiedemann Syndrome
Enchondromatosis
- see Ollier's Disease
Eosinophilic Granuloma
--see Hystiocytosis
Erb's Palsy
National Brachial Plexus/Erb's Palsy Association, Inc.
Erb's Place
P.O. Box 23
Larsen, WI 54947
http://www.nbpepa.org
erbspalsy@usa.net
Osteogenesis Imperfecta
Osteogenesis
Imperfecta Foundationdation
804 West Diamond Ave.
Suite 210
Gaithersburg, MD 20878
(301) 947-0083 or (800) 981-2663
Fax: (301) 947-0456
E-mail: BoneLink@oif.org
Prader-Willi Syndrome
Rett Syndrome
International Rett Syndrome Association
9121 Piscataway Road
Suite 2B
Clinton, MD 20735
(800) 818-RETT
(301) 856-3334
www.rettsyndrome.org
irsa@rettsyndrome.org
Scoliosis
National Scoliosis Foundation
5 Cabot Place
Stoughton, MA 02072
(781) 341-6333
(617) 341-8333
www.scoliosis.org
Scoliosis@aol.com
Spina Bifida (Mylelomeningocoele)
Spina
Bifida Association of America
4590 Macarthur Blvd, NW, Suite 250
Washington, DC 20007-4226
Voice: (800) 621-3141or (202) 944-3285
Fax: (202) 944-3295
www.sbaa.org
Spinal Muscular Atrophy (SMA)
P. O. Box 196
Libertyville, IL 60048-0196
Phone: (800)
886-1762
(847)
367-7620
Fax: (847) 367-7623
Turner Syndrome Society
14450 TC Jester
Suite 260
Houston TX 77014
Toll Free 800-365-9944; P: 832-249-9988; F: 832-249-9987