National and Ohio-Based Resources

UCP (United Cerebral Palsy Associations)

• Address: 1660 L Street North West, Suite 700, Washington, DC 20036-5602
• Toll-Free Phone: (800) 872-5827
• Phone: (202) 776-0406
• Fax: (202) 776-0414
• Website: https://www.ucp.org/

Muscular Dystrophy Association

• Address: 161 N. Clark, Suite 3550, Chicago, Illinois 60601
• Toll-Free Phone: (800) 572-1717
• Website: https://www.mda.org/

National Down Syndrome Society

• Address: 666 Broadway, 8th Floor, New York, NY 10012-2317
• Toll-Free Phone: (800) 221-4602
• Phone: (212) 460-9330
• Fax: (212) 979-2873
• Website: https://www.ndss.org/

Foundation for Children with Down Syndrome

• Address: 1502 S. Michigan Avenue, 12-3, Joplin, MO 64804
• Phone / Fax: (417) 626-8603

National Dysautonomia Research Foundation (NDRF)

• Address: P. O. Box 301, Red Wing, MN 55066-0301
• Phone: (651) 267-0525
• Fax: (651) 267-0524

The International Dyslexia Association

• Address: 40 York Road, Suite 400, Towson, MD 21204-2044
• Toll-Free Phone: (800) 222-3123
• Phone: (410) 296-0232
• Fax: (410) 321-5069
• Website: https://dyslexiaida.org/

American Epilepsy Society

• Address: 342 North Main Street, West Hartford, CT 06117-2507
• Phone: (860) 596-7505
• Fax: (860) 586-7550
• Website: https://www.aesnet.org/

Epilepsy Foundation – National Office

• Address: 8301 Professional Place East, Landover, MD 20785
• Toll-Free Phone: (800) 748-8008
• Phone: (301) 459-3700
• Fax: (301) 577-2684
• Website: https://www.epilepsy.com/

Brachial Plexus/Erb’s Palsy Support & Information Network, Inc.

• Contact: Brenda Copeland-Moore
• Address: P.O. Box 23, Larsen, WI 54947
• Phone: (920) 836-9587
• Website: http://ubpn.org/

Dysautonomia Foundation, Inc.

• Address: 315 West 39th Street, Suite 701, New York, NY 10018
• Phone: (212) 279-1066
• Fax: (212) 279-2066
• Website: http://www.familialdysautonomia.org/

Muscular Dystrophy Association

• Contact: Judith R. Duncan
• Address: 3300 East Sunrise Drive, Tucson, AZ 85718-3299
• Toll-Free Phone: (800) 572-1717
• Phone: (520) 529-2000
• Fax: (520) 529-5300
• Website: https://www.mda.org/

Muscular Dystrophy Family Foundation, Inc.

• Address: 2330 North Meridian Street, Indianapolis, IN 46208-5730
• Toll-Free Phone: (800) 544-1213
• Phone: (317) 923-6333
• Website: http://mdff.org/

Parents of Galactosemic Children, Inc.

• Address: 1412 Sweet Bay Court, Covington, LA 70433
• Phone: (985) 875-3136
• Website: http://www.galactosemia.org/

American Society for Deaf Children

• Address: 3820 Hartzdale Drive, Camp Hill, PA 17011
• Toll-Free Phone: (800) 942-2732
• Phone: (717) 703-0073
• Fax: (717) 909-5599
• Website: http://deafchildren.org/

American Speech, Language, Hearing Association

• Address: 2200 Research Boulevard, Rockville, MD 20850
• Toll-Free Phone: (800) 634-8255
• Phone: (301) 897-5700
• Fax: (240) 333-4705
• Website: https://www.asha.org/

Hydrocephalus Association

• Address: 4340 East West Highway, Suite 905, Bethesda, MD 20814-4447
• Toll-Free Phone: (888) 598-3789
• Phone: (301) 202-3811
• Fax: (301) 202-3811
• Website: https://www.hydroassoc.org/
• Email: [email protected]

Parents of Infants and Children with Kernicterus (PICK)

• Website: https://www.pickonline.org
• Email: [email protected]

Learning Disabilities Association of America

• Address: 4156 Library Road, Pittsburgh, PA 15234-1349
• Phone: (412) 341-1515
• Fax: (412) 344-0224
• Website: https://ldaamerica.org/
• General Inquiries: [email protected]

National Center for Learning Disabilities

• Address: 32 Laight Street, Second Floor, New York, NY 10013
• Website: https://www.ncld.org/

International Long Q-T Syndrome Registry

• General Inquiries: [email protected]

Sudden Arrhythmia Death Syndromes (SADS) Foundation

• Address: 4527 South 2300 East, Suite 104, Salt Lake City, Utah 84117
• Patient Support Line: (801) 948-0654
• Phone: (801) 272-3023
• Website: https://www.sads.org/

• President: Sandy Bulcher
• General Organization Inquiries: [email protected]
• Website: http://www.msud-support.org/

Federation of Families for Children’s Mental Health

• ​​​​​​Executive Director: Lynda Gargan
• Address: 12320 Parklawn Drive, Rockville, MD 20852
• Phone: (240) 403-1901
• Website: https://www.ffcmh.org/
• General Inquiries: [email protected]

Children’s Wish Foundation International

• Address: 8615 Roswell Road, Atlanta, GA 30350-1822
• Toll-Free Phone: (800) 323-WISH (9474)
• Phone: (770) 393-WISH (9474)
• Fax: (770) 393-0683
• Website: https://enchantedpeach.org/

March of Dimes Foundation

• Address: 1275 Mamaroneck Avenue, White Plains, NY 10605
• Website: https://www.marchofdimes.org

United Mitochondrial Disease Foundation

• Address: 8085 Saltsburg Road, Suite 201, Pittsburgh, PA 15239
• Toll-Free Phone: (888) 317-UMDF (8633)
• Phone: (412) 793-8077
• Fax: (412) 793-6477
• Website: http://www.umdf.org/

Muscular Dystrophy Association

• Address: 161 N. Clark, Suite 3550, Chicago, Illinois 60601
• Toll-Free Phone: (800) 572-1717
• Website: https://www.mda.org/

Muscular Dystrophy Family Foundation, Inc.

• Address: P.O. Box 776, Carmel, IN 46032
• Phone: (317) 615-9140
• Website: http://mdff.org/

National Institute of Neurological Disorders & Stroke

• Address: P.O. Box 5801, Bethesda, MD 20824
• Toll-Free Phone: (800) 352-9424
• Website: https://www.ninds.nih.gov

Neutropenia SCN International Registry

• Address: 1107 NE 45th Street, Suite 345, Seattle, WA 98105
• Toll-Free Phone: (800) 726-4463
• Phone: (206) 543-9749
• Fax: (206) 543-3668
• Website: https://depts.washington.edu/registry/

CureSearch for Children’s Cancer

• Address: 4600 East West Highway, Suite 600, Bethesda, MD 20814-3457
• Toll-Free Phone: (800) 458-6223
• Fax: (301) 718-0047
• Website: https://curesearch.org/

National PKU Alliance

• Address: PO Box 1872, Eau Claire, WI 54702
• Phone: (715) 495-4008
• Fax: (715) 713-0138
• Website: https://npkua.org

National PKU News

• Address: PO Box 43552, Montclair, NJ 07043
• Phone: (973) 619-9160
• Website: https://pkunews.org

Foundation for Prader-Willi Research

• Address: 340 S. Lemon Ave, #3620, Walnut, CA 91789
• Toll-Free Phone:(888) 322-5487
• Fax: (888) 559-4105
• Website: https://www.fpwr.org/

The Prader-Willi Syndrome Association (USA)

• Address: 8588 Potter Park Drive, Suite 500, Sarasota, FL 34238
• Toll-Free Phone: (800) 926-4797
• Website: https://www.pwsausa.org/

National Organization for Rare Disorders (NORD)

• Address: 55 Kenosia Avenue, Danbury, CT 06810
• Phone: (203) 744-0100
• Fax: (203) 263-9938
• Website: https://rarediseases.org/

United Spinal Association

• Address: 120-34 Queens Blvd. #320, Kew Gardens, NY 11415
• Phone: (718) 803-3782
• Fax: (718) 803-0414
• Website: https://www.unitedspinal.org

Cure SMA

• Mailing Address: 925 Busse Rd, Elk Grove Village, IL, 60007
• Toll-Free Phone: (800) 886-1762
• Website: http://www.curesma.org/

National Institute of Neurological Disorders & Stroke

• Address: P.O. Box 5801, Bethesda, MD 20824
• Toll-Free Phone: (800) 352-9424
• Website: https://www.ninds.nih.gov

Sudden Unexpected Infant Death (SUID) & Sudden Infant Death Syndrome (SIDS) Gateway

• Website: https://www.mchlibrary.org/collections/suid-sids/

American Council of the Blind

• Address: 1703 N Beauregard St, Suite 420, Alexandria, VA 22311
• Toll-Free Phone: (800) 424-8666
• Phone: (202) 467-5081
• Fax: (703) 465-5085
• Website: https://www.acb.org/

American Foundation for the Blind

• Address: 1401 South Clark Street, Suite 730, Arlington, VA 22202
• Website: https://www.afb.org/

Blind Children's Center

• Address: 4120 Marathon St., Los Angeles, CA 90029
• Phone: (323) 664-2153
• Website: http://www.blindchildrenscenter.org

Blind Children's Fund

• Address: P.O. Box 187, Grand Ledge, MI 48837-0187
• Website: http://blindchildrensfund.org/
• Email:[email protected]

Braille Institute of America

• Address: 741 North Vermont Avenue, Los Angeles, CA 90029
• Phone: (323) 663-1111
• Fax: (323) 663-0867
• Website: https://www.brailleinstitute.org/

National Association for Parents of Children with Visual Impairments

• Address: 250 West 64th Street, New York, NY 10023
• Toll-Free Phone: (800) 284-4422