GENETIC ORGANIZATIONS

 

See also: Jewish Genetic Disorders

Tinok Bari (Healthy Baby)

 

055-670-5419

1800-90-95-95 (24 hours)

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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

www.geneticalliance.org

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Genetic and Rare Diseases Information Center

888-205-2311 (V),          888-205-3223 (TTY)

PO Box 8126

Gaithersburg, MD 20898-8126

www.rarediseases.info.nih.gov

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National Organization for Rare Disorders

800-999-6673 (V/TTY)

www.rarediseases.org 

 

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

www.handstoangels.com

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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.