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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: http://www.addresources.org
  • 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

  • Beckwith-Wiedemann Syndrome

    Beckwith-Wiedemann Children Foundation

  • 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.

  • 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.

  • 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

  • Kernicterus

    Parents of Infants and Children with Kernicterus (PICK)

  • 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

    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

  • 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: http://childrenswish.org
  • Methylmalonic Acidemia

    March of Dimes Foundation

  • 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

  • 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)

  • Spinal Cord Injuries

    United Spinal Association

    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

  • 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

    Blind Children's Center

    Blind Children's Fund

    Braille Institute of America

    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/

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