The Children's Hospital of Philadelphia34th Street & Civic Center Boulevard, Philadelphia, PA 19104Phone: 215-590-2920 Record last updated on 10/07/2021 [...]
Populations Served: Rare disorders/low incidence
Advocacy and Awareness
Aicardi Syndrome FoundationPO Box 3202, St. Charles, IL 60174Phone: 800-374-8518 Alternate Phone: 630-377-0252 Record last updated on 10/28/2021 [...]
Advocacy and Support
Every Life Foundation for Rare Diseases1012 14th Street, NW, Suite 500, Washington, DC 20005Phone: 202-697-7273 Record last updated on 11/02/2021 [...]
Brookline Area Office
Massachusetts Rehabilitation Commission 18 Tremont Street, Suite 200, Boston, MA 02108Phone: 617 357-8137 [...]
Caregiver Resources
Ataxia Telangiectasia Children's Project6810 State Road 7, Suite 125, Coconut Creek, FL 33073Phone: 954-481-6611 Alternate Phone: 800-543-5728 Record last updated on 10/29/2021 [...]
Day Habilitation Services at Advocates Life Skills and Learning Center
Advocates290 Eliot St, Ashland, MA 01721Phone: 508-628-7303 Alternate Phone: 508-881-6998 Record last updated on 12/26/2018 [...]
Dup15q Alliance
Dup15q AlliancePO Box 1669, Highland Park, IL 13066Phone: 313-509-7984 Alternate Phone: 704-256-0204 Record last updated on 01/18/2022 [...]
Hermansky-Pudlak Syndrome Network Services
Hermansky-Pudlak Syndrome NetworkOne South Road, Oyster Bay, NY 11771Phone: 516-922-4022 Alternate Phone: 800-789-9477 Record last updated on 10/04/2021 [...]
Holyoke Area Office
Massachusetts Rehabilitation Commission 187 High Street, Holyoke, MA 01040Phone: 413 536-8200 [...]
Information and Resources
Global Genes28 Argonaut, Suite 150, Aliso Viego, CA 92656Phone: 949-248-7273 Record last updated on 11/02/2021 [...]
