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Frequently Asked Questions and Answers

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Question 21.11.1:
Resource References: I need some information on Jewish Genetic Diseases. Where do I start?


There are a number of places that you can look:

  1. Consult the "Online Mendelian Inheritance in Man" database at The Johns Hopkins University (<>), or the GDB Genome Data Base (<>).

  2. Consult the National Foundation for Jewish Genetic Diseases:

    National Foundation for Jewish Genetic Diseases, Inc.
    250 Park Avenue
    Suite 1000
    New York, New York 10177
    (212) 371-1031

  3. Check out the Jewish Genetic Disease Program of the Saint Barnabas Health Care System ( This is a grant-funded program with the goal of educating people about disorders more common in the Jewish population. The site has information on common Jewish Genetic Diseases, and links to information on the following individual disorders: Bloom Syndrome, Canavan Disease, Cystic Fibrosis, Fanconi Anemia (Type C), Familial Dysautonomia, Gaucher Disease, Niemann-Pick Disease (Type A), Tay-Sachs Disease, and Mucolipidosis IV. You may contact them at or call (973) 322-7020 for more information.

  4. If you are dealing with a Tay Sachs related disease:

    National Tay Sachs and Allied Diseases Association
    2001 Beacon Street
    Brookline, MA 02146
    (617) 277-4463

  5. If you are dealing with Mucolipidosis Type IV (ML4), an inherited metabolic storage disease traced back to Lithuania and Poland:

    ML4 Foundation
    719 East 17th Street
    Brooklyn , NY 11230
    ML4 Home Page:

  6. If you are dealing with Fanconi Anemia, an inherited chromosomal/haematological disorder:

    Fanconi Anemia Research Fund, Inc.
    1902 Jefferson Street, Suite 2
    Eugene, OR 97405
    Phone:(541) 687-4658
    Home Page:

  7. Check out some of the medical links at Hebrew University in Jerusalem (<>)

The FAQ is a collection of documents that is an attempt to answer questions that are continually asked on the soc.culture.jewish family of newsgroups. It was written by cooperating laypeople from the various Judaic movements. You should not make any assumption as to accuracy and/or authoritativeness of the answers provided herein. In all cases, it is always best to consult a competent authority--your local rabbi is a good place to start.

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