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

Hereditary Inclusion Body Myopathy (HIBM) and Neuromuscular Diseases www.ndf-hibm.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

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

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