National Tay-Sachs & Allied Diseases Association

Founded in 1957, National Tay-Sachs & Allied Diseases Association (NTSAD) leads worldwide efforts to find treatments, therapies, and eventually a cure for Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.

Family Support and Services

We provide more than 800 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.

Advancing Research and Advocating for Our Ultra-rare Disease Community

We support research, promote prenatal testing and prevention, and raise awareness of ultra-rare genetic neurodegenerative diseases. Clinicians, researchers, and industry members recognize the pivotal role NTSAD plays in accelerating the development of treatments, therapies, and cures.

Our Vision

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 community