Jewish Genetic Disorders
Jewish Genetic Disorder Organizations:
Victor Center for Jewish Genetic Diseases
www.einstein.edu/jewishgenetics
Jewish Genetic Disease Consortium
www.jewishgeneticdiseases.org
Mount Sinai School of Medicine Center for Jewish Genetic Diseases
www.mssm.edu/jewish_genetics
Jewish Genetic Diseases Center of Greater Phoenix
www.jewishgeneticsphx.org
Bloom's Syndrome:
The Milo Gladstein Foundation for Bloom's’s Syndrome
http://www.bloomssyndrome.org
Canavan:
Canavan Foundation
http://www.canavanfoundation.org
Canavan Research Illinois
http://www.canavanresearch.org
Canavan Research Foundation
www.canavan.org
Cystic Fibrosis:
www.cff.org
Dystonia:
Dystonia Medical Research Foundation
www.dystonia-foundation.org
The Bachman-Strauss Dystonia & Parkinson Foundation
www.dystonia-parkinsons.org
Care 4 Dystonia
www.care4dystonia.org
Familial Dysautonomia:
Dysautonomia Foundation
www.familialdysautonomia.org
FD Hope
www.fdhope.org
National Dysautonomia Research Foundation
www.ndrf.org
Fanconi Anemia:
Fanconi Anemia Research Fund, Inc.
www.fanconi.org
Fanconi Anemia UK
www.fanconi-anaemia.co.uk
Fanconi Canada
www.fanconicanada.org
Hope for Henry
www.hsg.org
International Fanconi Anemia Registry
www.rockefeller.edu/labheads/auerbach/description.php
Gaucher Disease:
National Gaucher Foundation
www.gaucherdisease.org
Gauchers Association UK
www.gaucher.org.uk
International Collaborative Gaucher Group (ICGG) Gaucher Registry
www.lsdregistry.net/gaucherregistry
Comprehensive Gaucher Treatment Center
www.gaucherwest.com/
Mount Sinai Comprehensive Gaucher Disease Treatment Center
www.mssm.edu/gaucher/
Researching Disease: Dr. Roscoe Brady & Gaucher Disease
www.history.nih.gov/exhibits/gaucher
Glycogen Storage Disease:
Association for Glycogen Storage Disease
www.agsdus.org
Children’s Fund for Glycogen Storage Disease Research
www.cureGSD.org
Mucolipidosis IV:
Mucolipidosis IV Foundation
www.ml4.org
Neimann-Pick Disease:
National Niemann-Pick Foundation
www.nnpdf.org
Tay-Sachs Disease:
National Tay-Sachs and Allied Disease Association
www.ntsad.org
National Tay-Sachs and Allied Diseases Association of Delaware Valley
www.tay-sachs.org
National Tay-Sachs & Allied Diseases Association New York Area
Serving New York, New Jersey & Connecticut
www.ntsad-ny.org
National Resources:
Genetic Alliance
For people living with genetic diseases and their families. Disease information, help line and support groups, ethical, legal, and social issues.
www.geneticalliance.org
March of Dimes Birth Defects Organization
www.marchofdimes.com
National Institute of Health-Office of Rare Diseases
http://rarediseases.info.nih.gov
National Organization for Rare Diseases
www.rarediseases.org
National Society of Genetic Counselors
www.nsgc.org
Bonei Olam
www.boneiolam.org
Chai Lifeline
www.chailifeline.org
123 Genomics
An information clearinghouse on genetics and disorders.
www.123genomics.com
Family Village
"A global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support." Includes most of the Jewish genetic disorders.
www.familyvillage.wisc.edu
Gene Tests
www.genetests.org
Genetic and Rare Diseases Information Center (GARD Center)
www.genome.gov/10000409
Jewish Genetic Diseases: A Mazornet Guide
www.mazornet.com/genetics
Lysosomal Diseases New Zealand
Tay-Sachs, Canavan disease, MLIV, and Gaucher disease are all lysosomal diseases.
www.ldnz.org.nz
Med Help International
Find conditions and disorders using their search feature.
www.medhelp.org
Mums National Parent-to-Parent Network
Sets up support groups for parents of disabled children.
www.netnet.net/mums
National Institute of Neurological Disorders and Stroke
www.ninds.nih.gov
University of Kansas Medical Center Genetic and Rare Conditions Site
http://www.kumc.edu/gec/support
UPMC Genetics Education and Counseling Program
www.upmc.edu/healthmed/services/GeneticsCounseling
This page last updated on March 27, 2007.
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