National Organizations Promoting Screening for Jewish Genetic Disorders:

JScreen At-Home Jewish Genetic Screening

Einstein Victor Center for the Prevention of Jewish Genetic Diseases

Center for Jewish Genetics

My Jewish Genetic Health

Jewish Genetic Disease Consortium

SHORE (Sephardic Health Organization for Referral & Education)

National Society of Genetic Counselors

National Organizations for Individual Disorders:

Ataxia-Telangiectasia Children’s Project

Bloom’s Syndrome Foundation

Canavan Foundation

Creutzfeldt-Jakob Disease Foundation

Cystic Fibrosis Foundation

Dysautonomia Foundation

RareConnect FMF Community

Fanconi Anemia Research Fund

National Gaucher Foundation

Association for Glycogen Storage Disease

Glucose-6-Phosphate Dehydogenase Deficiency (G6PD)

Neuromuscular Disease Foundation: Hereditary Inclusion Body Myopathy (HIBM) and GNE Myopathy

Joubert Syndrome and Related Disorders Foundation

MSUD Family Support Group

Mucoliposis IV Foundation

Muscular Dystrophy Association

National Niemann-Pick Disease Foundation

Families of SMA

National Tay-Sachs and Allied Diseases Association

Thalassemia Support Foundation

Coalition for Usher Syndrome Research

National Organization for Rare Disorders

Information on the Dor Yeshorim program:

Center for Jewish Genetics

Book List:

Genetics/Jewish Genetics

Genetics For Dummies 2nd edition by Tara Rodden Robinson

Jacob’s Legacy: A Genetic View of Jewish History by David B. Goldstein

Jewish Genetic Disorders: A Layman’s Guide by Ernest L. Abel

Legacy: A Genetic History of the Jewish People by Harry Ostrer

Memoirs/Personal Stories

Blood Matters: From BRCA1 to Designer Babies, How the World and I Found Ourselves in the Future of the Gene by Masha Gessen

Breathing For a Living: A Memoir by Laura Rothenberg

Hope Will Find You: My Search for the Wisdom to Stop Waiting and Start Living by Naomi Levy

The Jeffrey Journey 2010 Edition by Helen Baldwin

One Brief Shining Moment by Arlene Swirksy

The Power of Two: A Twin Triumph over Cystic Fibrosis by Isabel Stenzel Byrnes and Anabel Stenzel

Saving Henry: A Mother’s Journey by Laurie Strongin

The Still Point of the Turning World by Emily Rapp