National Tay-Sachs & Allied Diseases Association

About Us

Connection, Collaboration, and Community

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. We drive research, build connections, facilitate collaboration, and nurture 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.

Advancing Research, Providing Education, and Advocating for Our Community

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.

Our Mission

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.

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

What We Offer

Family Services

NTSAD’s dedicated staff provides comprehensive programs, information, and services to affected families and individuals coping with a diagnosis, grief, and bereavement through individual and Community support. NTSAD links parents, grandparents, extended family, affected adults, and their families and caregivers to each other via a confidential network. Other services available to rare families include an Annual Family Conference, monthly newsletters, resources, online programs and forums, help navigating health insurance and clinical trials, and tools for raising awareness and funds.

The cornerstone of NTSAD’s programming is the Annual Family Conference where individuals and families gather for four days of community, support, and updates on caregiving and the latest research. Our new regional meet-ups connect families and individuals in addition – or as an alternative – to the Annual Family Conference.


NTSAD’s goals are to direct, fund, and promote research to develop treatments and cures. NTSAD’s research priorities include early diagnosis, newborn screening, basic and translational research, and clinical development. Working in partnership with our Scientific Advisory Council, NTSAD identifies promising therapeutic approaches to fund through the Research Initiative grant program.

Since 2002, NTSAD’s Research Initiative has awarded more than $4 million in grants that have garnered more than $30 million of additional funding. Our efforts have yielded an unparalleled number of clinical trials leading to potential new therapies for all four diseases on which we focus. It is a time of great hope, but there is still work to be done.

It is an unprecedented time for the NTSAD Community with several active clinical trials for Tay-Sachs, Canavan, GM1, and Sandhoff diseases.

Collaboration and Partnerships

NTSAD partners with companies with drug development programs in Canavan, GM1 gangliosidosis, and GM2 gangliosidoses (Tay-Sachs and Sandhoff) from early-stage to pre-clinical and clinical trials. NTSAD brings the voices of families and their perspectives to conversations with industry as potential therapeutic drug programs are developed. In addition, NTSAD’s professional team:

  • Leverages NTSAD’s 66+ years of expertise as a leading patient advocacy organization

  • Partners with global patient advocacy organizations and foundations to best serve affected individuals and families around the world

  • Educates partners about the impact these rare diseases have on families and adults

  • Connects companies with families willing to share their stories and experiences

  • Recruits families to participate in focus groups, interviews, and other opportunities

  • Serves as a liaison between the patient community and companies

  • Collaborates on educational materials and communications about programs

  • Invites companies to participate in NTSAD’s Annual Family Conference


NTSAD advocates for families and persons of all ages with disabilities on an individual, state, and national level on issues such as health insurance coverage and government (supplemental) funding.


NTSAD offers educational and awareness programs directly as well as through collaborations with other organizations and community partners.

For further information please contact us at and visit our YouTube channel.