alexa National Tay-Sachs and Allied Diseases Association

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National Tay-Sachs and Allied Diseases Association

National Tay-Sachs and Allied Diseases Association (NTSAD) was founded in 1957 by a small group of concerned parents with children affected by Tay-Sachs disease or a related genetic disorder including all the lysosomal storage diseases and leukodystrophies. Dedicated to the defeat of Tay-Sachs and the allied diseases, it was an early pioneer in the development of community education about Tay-Sachs disease, carrier screening programs and laboratory quality control programs -- thereby ensuring that those being tested received accurate and reliable information and test results. Today, more than two million people have been tested for the Tay-Sachs gene, thousands of Tay-Sachs carriers identified and hundreds of healthy children born to high-risk couples. National Tay-Sachs & Allied Diseases Association (NTSAD) is one of the oldest patient advocacy groups in the country. We focus on funding research, supporting over 500 families and individuals worldwide, and raising awareness to prevent disease. Today, it is recognized as a leading non-profit patient group with a demonstrated commitment to service, science and support.  It gives help and hope to thousands of individuals and families from many backgrounds and ethnicities who have been or are affected by Tay-Sachs, Canavan and related genetic diseases all over the world. NTSAD provides comprehensive support services to affected families and individuals through its Peer Support Group (PSG). It links about 500 parents, grandparents, extended family, affected adults and their families and caregivers to each other via a confidential network. Other services available to PSG members include an Annual Family Conference, PSG directory, quarterly newsletters, and materials and support for fundraising and awareness events. It's goals are to direct, fund and promote research to develop treatments and cures.  Working with its Scientific Advisory Committee, it identifies promising therapeutic approaches to fund through the Research Initiative grant program. It offers educational and awareness programs directly as well as through collaborations with chapters, affiliates and other community partners.

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