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 02/20/2024 [...]
Caregiver Resources
Ataxia Telangiectasia Children's Project6810 N State Road 7 Suite 125, Coconut Creek, FL 33073Phone: 954-481-6611 Alternate Phone: 800-543-5728 Record last updated on 05/18/2023 [...]
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 Information and Support
Dup15q Alliance250 N Trade Street Suite 205 PMB 155, Matthews, NC 28105Phone: 313-509-7984 Alternate Phone: 704-256-0204 Record last updated on 02/27/2024 [...]
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 [...]
Information and Resources
Global Genes28 Argonaut, Suite 150, Aliso Viego, CA 92656Phone: 949-248-7273 Record last updated on 11/02/2021 [...]
Information and Support
International 22q11.2 Foundation, Inc. PO Box 532, Matawan, NJ 07747Phone: 877-739-1849 Record last updated on 08/14/2023 [...]
Information and Support
Joubert Syndrome & Related Disorders Foundation (JSRDF)9 Dorenfeld Court, Petaluma, CA 94952 Record last updated on 09/12/2022 [...]
