Tay-Sachs Disease

Other Places To Get Help

Online Resource

Family Village: A Global Community of Disability-Related Resources
Family Village, Waisman Center, University of Wisconsin-Madison
Web Address:	www.familyvillage.wisc.edu
This Web site has information about disabilities that affect children and their families. It also has links to many online resources. There is information about Tay-Sachs disease, Down syndrome, cystic fibrosis, group B strep, and many other conditions.

Organizations

Center for Jewish Genetic Diseases, Mount Sinai School of Medicine
Box 1497
One Gustave L. Levy Place
New York, NY  10029
Phone:	(212) 659-6774
Web Address:	www.mssm.edu/jewish_genetics
The Center for Jewish Genetic Diseases studies diseases that affect Ashkenazi Jews. The Center's mission is to improve the diagnosis, treatment, and counseling of patients and their families suffering from Jewish genetic diseases and to conduct research to combat these diseases.
Chicago Center for Jewish Genetic Disorders
Ben Gurion Way, 30 South Wells Street
Chicago, IL  60606
United States
Phone:	312-357-4718
E-mail:	jewishgeneticsctr@juf.org
Web Address:	www.jewishgeneticscenter.org
This organization provides public and professional education about Jewish genetic disorders. It also promotes screening and prevention programs, information, and referrals.
Genetic Alliance
4301 Connecticut Avenue NW
Suite 404
Washington, DC  20008-2369
Phone:	1-800-336-GENE (1-800-336-4363) (202) 966-5557
Fax:	(202) 966-8553
E-mail:	info@geneticalliance.org
Web Address:	www.geneticalliance.org
The Genetic Alliance is an international organization made up of millions of people with genetic conditions and more than 600 advocacy, research, and health care organizations that represent their interests. The Alliance builds partnerships to promote healthy lives for all those living with genetic conditions. The Genetic Alliance promotes healthy lives by working to speed the translation of genetic advances into quality and affordable health care, public awareness, and consumer-centered public policies.
March of Dimes
1275 Mamaroneck Avenue
White Plains, NY  10605
Phone:	(914) 997-4488
Web Address:	www.marchofdimes.com
The March of Dimes tries to improve the health of babies by preventing birth defects, premature birth, and early death. March of Dimes supports research, community services, education, and advocacy to save babies' lives. The organization's Web site has information on premature birth, birth defects, birth defects testing, pregnancy, and prenatal care. You can sign up to get a free newsletter and also explore Understanding Your Newborn: An Interactive Program for New Parents.
National Library of Medicine: Genetics Home Reference
8600 Rockville Pike
Bethesda, MD  20894
Phone:	1-888-FIND-NLM (1-888-346-3656) (301) 594-5983
Fax:	(301) 402-1384
TDD:	1-800-735-2258
E-mail:	custserv@nlm.nih.gov
Web Address:	http://ghr.nlm.nih.gov
This Web site has consumer-friendly information about how human health is affected by genetics. There is information about genetic conditions, counseling, testing, and research as well as definitions of mutations, inheritance, and more.
National Tay-Sachs and Allied Diseases Association, Inc. (NTSAD)
2001 Beacon Street
Suite 204
Boston, MA  02135
Phone:	1-800-906-8723
Fax:	(617) 277-0134
E-mail:	info@ntsad.org
Web Address:	www.ntsad.org
NTSAD is a nonprofit, volunteer health agency devoted to the treatment and prevention of Tay-Sachs and other genetic conditions. Its Web site has information about genetic diseases, carrier testing, genetic counseling, and more. NTSAD has a support group for families and individuals affected by genetic diseases.

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Author:	Debby Golonka, MPH	Last Updated: April 4, 2008
Medical Review:	Michael J. Sexton, MD - Pediatrics Siobhan M. Dolan, MD, MPH - Reproductive Genetics
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