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 support research, promote carrier screening and prenatal testing, and raise awareness of rare genetic diseases. Clinicians, researchers, and industry members recognize the pivotal role NTSAD plays in accelerating the development of treatments, therapies, and cures.
We envision a world in which Tay-Sachs, Canavan, GM1, and Sandhoff diseases are no longer fatal or debilitating. To uphold our vision, NTSAD will:
- Provide compassionate support, advocate for affected individuals and their families, and promote early diagnosis and prevention
- Empower, educate, and connect affected individuals and families
- Be a key resource for individuals, families, clinicians, researchers, and industry members
- Direct, promote, and invest in research to accelerate the development of treatments, therapies, and cures
- Serve as a leader within the rare disease communi