Tay-Sachs DiseaseOther Places To Get HelpOnline Resource| Family Village: A Global Community of Disability-Related Resources, Tay-Sachs Disease Section | | Family Village, Waisman Center, University of
Wisconsin-Madison | | Web Address: | http://www.familyvillage.wisc.edu/lib_tays.htm (accessed: January 31,
2002) | | | 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. |
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Organizations| 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. |
| | 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: | http://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 Ave | |
Suite 203 | | Jenkintown, PA 19046 | | Phone: | (215) 887-0877 | | Fax: | (215) 887-1931 | | E-mail: | ntsad@aol.com | | Web Address: | http://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. |
| | National Tay-Sachs and Allied Diseases
Association | | 2001 Beacon Street | |
Suite 204 | | Brighton, MA 02135 | | Phone: | 1-800-906-8723 | | Fax: | (617) 277-0134 | | E-mail: | infontsad.org | | Web Address: | http://www.ntsad.org | | | The National Tay-Sachs & Allied Diseases Association (NTSAD) is
dedicated to the treatment and prevention of Tay-Sachs, Canavan, and related
diseases. Strategies for achieving these goals include public and professional
education, research, genetic screening, family services, and advocacy. |
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