This page lists by topic area a collection of organizations, journals, and online resources that provide information about treatment, support, or services for people with disabilities, as well as their families and professionals who support them.
Genetic and Rare Disorders
- Genetic Alliance.
The Genetic Alliance is a non-profit organization that engages individuals, families, and communities to transform health. The Alliance convenes powerful networks, delivers actionable information, builds intuitive tools, and drives policy decisions.
Phone: Number(202) 966-5557; available Monday through Friday from 9 am to 5 pm, ET.
Fax: (202) 966-8553.
Email: info@geneticalliance.org.
- Genetic and Rare Diseases Information Center (GARD).
GARD provides access to experienced information specialists connecting patrons to information and support resources about genetic and rare diseases.
Toll free: (888) 205-2311; (888) 205-3223 (TTY); (301) 251-4925 (International); available Monday through Friday from 12pm to 6 pm ET.
Fax: (301) 251-4911.
- National Organization for Rare Disorders (NORD).
NORD is a non-profit organization dedicated to individuals with rare diseases and the organizations that serve them. NORD provides ease of access to world-class care and expertise; advances innovation in rare disease care and treatment through research, patient registries, and partnerships; advocates for life-changing laws, policies, and programs; and supports and strengthens a diverse network of more than 300 patient advocacy organizations that serve individuals with rare diseases.
Contact form.