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About the Nonprofit

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National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.

We provide more than 750 individuals and families from around the world with connection, resources, and individual support.

For more than 65 years, we’ve built an active and caring community of affected individuals, parents, siblings, grandparents, extended family, and friends. Every year, our Community meets at the Annual Family Conference to reconnect, support, and learn together.

We also support research, promote carrier screening and prenatal testing, and raise awareness of rare genetic diseases. Since its inception in 2002, the National Tay-Sachs & Allied Diseases Association (NTSAD) Research Initiative has awarded more than 69 grants and provided more than $4.1 million in funding. The data generated in some of these projects funded by NTSAD grant opportunities were leveraged to obtain future funding from larger National Institutes of Health (NIH) grants, resulting in over $10 million toward finding cures.