- Last Updated: Wednesday, 30 September 2015 10:30
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, NTSAD is recognized as a leading non-profit patient group with a demonstrated commitment to service, science and support. NTSAD 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.
The programs and services offered include:
NTSAD provides comprehensive support services to affected families and individuals through its Peer Support Group (PSG). NTSAD 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.
NTSAD's goals are to direct, fund and promote research to develop treatments and cures. Working with its Scientific Advisory Committee, NTSAD identifies promising therapeutic approaches to fund through the Research Initiative grant program.
NTSAD offers educational and awareness programs directly as well as through collaborations with chapters, affiliates and other community partners.
NTSAD advocates for families and persons of all ages with disabilities on an individual, state and national level as requested on issues such as health insurance coverage and government (supplemental) funding.