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

General Description

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

www.SpecialOlympics.org

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

 Little People of America

National Headquarters
Box 745
Lubbock, TX 79408
(888) LPA-2001 (English and Spanish)
E-mail: LPADataBase@juno.com
          www.lpaonline.org


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
 

www.oif.org   

E-mail: BoneLink@oif.org

 

Prader-Willi Syndrome

 

Basic Information

 

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

www.fsma.org

 

Turner Syndrome Society

 

14450 TC Jester

Suite 260

Houston TX 77014

Toll Free 800-365-9944; P: 832-249-9988; F: 832-249-9987

www.turner-syndrome-us.org/

tssus@turner-syndrome-us.org