Tay-Sachs Disease

Other Places To Get Help

Online Resource

Family Village: A Global Community of Disability-Related Resources, Tay-Sachs Disease Section
Family Village, Waisman Center, University of Wisconsin-Madison
Web Address:	www.familyvillage.wisc.edu/lib_tays.htm
This Web site is part of a larger Internet site that has information and resources for many diseases and disabilities that affect children and their families. The Tay-Sachs disease section has information about organizations, Web sites, and e-mail support groups for parents of children with Tay-Sachs disease.

Organizations

Canadian Association for Tay-Sachs and Allied Diseases
569 Laural Drive
Burlington, ON  L7L 5E1
Phone:	(905) 634-4101
Web Address:	www.catsad.ca
This organization was formerly called National Tay-Sachs and Allied Diseases of Ontario. It provides emotional support and guidance to parents of children afflicted with Tay-Sachs or an allied disease. Although the group is centred in southern Ontario, membership and queries from all of Canada are welcome.
Canadian Organization for Rare Disorders
151 Bloor Street West
Suite 600
Toronto, ON  M5S 1S4
Phone:	1-877-302-7273 toll-free (416) 969-7464
Web Address:	www.cord.ca
The Canadian Organization for Rare Disorders (CORD) provides information on over 6,000 rare conditions. Through a network system, CORD links together individuals and families with the same rare disorder.
Chicago Center for Jewish Genetic Disorders
Ben Gurion Way
One South Franklin Street, Fourth Floor
Chicago, IL  60606
Phone:	(312) 357-4718
E-mail:	jewishgeneticsctr@juf.org
Web Address:	http://www.jewishgeneticscenter.org/
The Chicago Center for Jewish Genetic Disorders provides public and professional education to help community members find information and prevention strategies. The Center translates research into accessible information for the Jewish community at risk as well as for physicians and other health professionals.
Genetic Alliance
4301 Connecticut Avenue NW
Suite 404
Washington, DC  20008-2369
Phone:	(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.
Late-Onset Tay-Sachs Foundation
P.O. Box 5
Flourtown, PA  19031-0005
Phone:	(215) 836-9426 1-800-672-2022
E-mail:	lotsf@verizon.net
Web Address:	www.lotsf.org
This Web site provides information about late-onset Tay-Sachs disease.
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.
Mount Sinai 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 in New York City 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.
MUMS: National Parent-to-Parent Network
150 Custer Court
Green Bay, WI  54301-1243
Phone:	1-877-336-5333 (parents only) toll-free (920) 336-5333
Fax:	(920) 339-0995
E-mail:	mums@netnet.net
Web Address:	www.netnet.net/mums
MUMS is a national parent-to-parent organization for parents or caregivers of a child with any disability, rare or common disorder, chromosomal abnormality, or health condition. The organization's main purpose is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or a similar condition.
National Tay-Sachs and Allied Diseases Association of Delaware Valley (NTSAD-DV)
720 Greenwood Avenue
Suite 203
Jenkintown, PA  19046
Phone:	(215) 887-0877
Fax:	(215) 887-1931
E-mail:	ntsad@aol.com
Web Address:	www.tay-sachs.org
NTSAD-DV is a nonprofit voluntary health agency dedicated to the prevention and ultimate elimination of Tay-Sachs disease, Canavan disease, and related conditions. NTSAD-DV sponsors community testing and serves as a referral network and resource center for affected families and couples at risk. The organization also supports research of Tay-Sachs disease and related conditions.

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Author:	Carrie Henley Sabra L. Katz-Wise	Last Updated: June 20, 2006
Medical Review:	Adam Husney, MD - Family Medicine Michael J. Sexton, MD - Pediatrics Renee H. Martin, PhD - Medical Genetics
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