GENETIC ORGANIZATIONS
See also: Jewish Genetic Disorders
Tinok Bari (Healthy Baby)
055-670-5419
1800-90-95-95 (24 hours)
Israel
An organization in Israel for rare genetic diseases – especially life-threatening ones. They offer support groups (for very rare and life-threatening diseases, closed to relevant members only), financial assistance, help in researching, medical consultations, help figuring out data, etc. Their support groups are currently for more serious diseases, but their assistance spans all issues – for example, genetic hearing impairments and the like.
Genetic Alliance
800-336-4363, 202-966-5557
4301 Connecticut NW
Suite 404
Washington DC 20008
Genetic and Rare Diseases Information Center
888-205-2311 (V), 888-205-3223 (TTY)
PO Box 8126
Gaithersburg, MD 20898-8126
National Organization for Rare Disorders
800-999-6673 (V/TTY)
Dor Yeshorim
718-384-6060
Committee for prevention of Jewish genetic diseases
Pre-martial testing for Ashkenazi genetic diseases
Ashkenazi Jewish Genetic Diseases Page of the Jewish Virtual Library (website only)
Provides basic information on common Jewish genetic diseases and links to web sites offering more detailed information on specific disorders.
Victor Centers for Jewish Genetic Disorders
Affiliated with major medical research centers in Philadelphia, Boston and Miami. Offers resources related to Jewish genetic diseases
Hands to Angels Foundation
804-241-2009
An organization supporting the identification and eventual prevention of rare genetic disorders, and providing financial assistance to families coping with the many complications of these disorders.