Resources
National and Ohio-Based Resources
For Children with Birth Injuries, Birth Defects, and Disabilities
-
Attention Deficit Hyperactivity Disorder (ADHD)
- Address: 223 Tacoma Avenue South #100, Tacoma, WA 98402
- Phone: (253) 759-5085
- Fax: (253) 572-3700
- Website: https://www.cdc.gov/adhd/communication-resources/index.html
-
Kennedy Krieger Institute Center for Development & Learning
- Contact: Care Management
- Address: 707 North Broadway, Baltimore, MD 21205
- Toll-Free Phone: (888) 554-2080
- Fax: (443) 923-3240
-
Autism
Autism Society of America
- Address: 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814
- Toll-Free Phone: (800) 3AUTISM (328-8476)
- Phone: (301) 657-0881
- Fax: (301) 657-0869
- Website: http://www.autism-society.org/
Autism Treatment Center
- Address: 2080 S. Undermountain Road Sheffield, MA 01275
- Phone: (413) 229-2100
- Fax: (413) 229-3202
- Website: https://www.autismtreatmentcenter.org/
- Email: correspondence@option.org
-
Beckwith-Wiedemann Syndrome
Beckwith-Wiedemann Children Foundation
- Address: 9031 Cascadia Avenue, Everett, WA 98208
- Phone: (425) 338-4610
- Fax: (425) 357-8575
- Website: http://www.beckwithwiedemann.org/
-
Cerebral Palsy
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/
-
Charcot-Marie-Tooth Disease
Muscular Dystrophy Association
- Address: 161 N. Clark, Suite 3550, Chicago, Illinois 60601
- Toll-Free Phone: (800) 572-1717
- Website: https://www.mda.org/
-
Down Syndrome
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
-
Dysautonomia
National Dysautonomia Research Foundation (NDRF)
- Address: P. O. Box 301, Red Wing, MN 55066-0301
- Phone: (651) 267-0525
- Fax: (651) 267-0524
- Website: http://www.ndrf.org/
-
Dyslexia
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/
-
Epilepsy
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/
-
Erb’s Palsy
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/
-
Familial Dysautonomia
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/
-
Friedreich Ataxia
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/
-
Galactosemia
Parents of Galactosemic Children, Inc.
- Address: 1412 Sweet Bay Court, Covington, LA 70433
- Phone: (985) 875-3136
- Website: http://www.galactosemia.org/
-
Hearing Impairments
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
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: info@hydroassoc.org
-
Kernicterus
Parents of Infants and Children with Kernicterus (PICK)
- Website: https://www.pickonline.org
- Email: info@www.pickonline.org
-
Learning Disabilities
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: info@LDAAmerica.org
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: heartajm@heart.rochester.edu
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/
-
Maple Syrup Urine Disease
Maple Syrup Urine Disease Family Support Group
- President: Sandy Bulcher
- General Organization Inquiries: sandybulcher@gmail.com
- Website: http://www.msud-support.org/
-
Mental Illness
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: ffcmh@ffcmh.org
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/
-
Methylmalonic Acidemia
March of Dimes Foundation
- Address: 1275 Mamaroneck Avenue, White Plains, NY 10605
- Website: https://www.marchofdimes.org
-
Mitochondrial Disorders
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/
-
Neurological Disorders
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
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/
-
Pediatric Cancer
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/
-
Phenylketonuria (PKU)
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
-
Prader-Willi Syndrome
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/
-
RARE DISORDERS
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/
-
Spinal Cord Injuries
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/
-
Stroke
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 Infant Death Syndrome (SIDS)
Sudden Unexpected Infant Death (SUID) & Sudden Infant Death Syndrome (SIDS) Gateway
-
Visual Impairments
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:info@blindchildrensfund.org
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
- Website: http://www.napvi.org/