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
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
Tracy’s Story – The Other Side of the Coin by Tracy Lynn Armstrong