Resources

National Organizations Promoting Screening for Jewish Genetic Disorders:

JScreen At-Home Jewish Genetic Screening www.jscreen.org

Einstein Victor Center for the Prevention of Jewish Genetic Diseases www.victorcenter.org

Center for Jewish Genetics www.jewishgenetics.org

My Jewish Genetic Health www.myjewishgenetichealth.com

Jewish Genetic Disease Consortium www.jewishgeneticdiseases.org

SHORE (Sephardic Health Organization for Referral & Education) shoreforlife.org

National Society of Genetic Counselors www.nsgc.org

National Organizations for Individual Disorders:

Ataxia-Telangiectasia Children’s Project www.atcp.org

Bloom’s Syndrome Foundation www.bloomssyndrome.org

Canavan Foundation www.canavanfoundation.org

Creutzfeldt-Jakob Disease Foundation www.cjdfoundation.org

Cystic Fibrosis Foundation www.cff.org

Dysautonomia Foundation www.familialdysautonomia.org

RareConnect FMF Community www.rareconnect.org

Fanconi Anemia Research Fund www.fanconi.org

National Gaucher Foundation www.gaucherdisease.org

Association for Glycogen Storage Disease www.agsdus.org

Glucose-6-Phosphate Dehydogenase Deficiency (G6PD) www.g6pddeficiency.org

Neuromuscular Disease Foundation: Hereditary Inclusion Body Myopathy (HIBM) and GNE Myopathy www.curehibm.org

Joubert Syndrome and Related Disorders Foundation www.jsrdf.org

MSUD Family Support Group msud-support.org

Mucoliposis IV Foundation www.ml4.org

Muscular Dystrophy Association www.mda.org

National Niemann-Pick Disease Foundation www.nnpdf.org

Families of SMA www.fsma.org

National Tay-Sachs and Allied Diseases Association www.ntsad.org

Thalassemia Support Foundation www.helpthals.org

Coalition for Usher Syndrome Research www.usher-syndrome.org

National Organization for Rare Disorders www.rarediseases.org

Information on the Dor Yeshorim program:

Center for Jewish Genetics www.jewishgenetics.org

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