Diseases

Get reliable and accurate information about Tay-Sachs, Canavan, GM1, and Sandhoff diseases.

Family Support

Connect with our Director of Family Support who will answer your questions and share resources to help you navigate a diagnosis.

Research

Learn about ongoing studies, clinical trials, funding opportunities, and research initiatives, and browse our research library.

Events

Attend and support events that bring our community together and raise awareness and critical funds.

NTSAD News & Events

Read the Latest News and Subscribe to Community Connections, our e-newsletter.

NTSAD Community Connections

October 2026 Issue:
  • NTSAD Hosts First Canavan Think Tank
  • WORLDFair 2026 Annual Meeting
  • Gene Therapy Research in Jacob Sheep
  • Study Shows More Promising Results for Sandhoff Disease Gene Therapy
  • Day of Hope 2026 Raises Over $20,000
  • Developmental and Epileptic Encephalopathy (DEE) EL-PFDD
  • Imagine & Believe 2026: Join Us on November 12
  • Start Here: NTSAD’s Newly Diagnosed Family Toolkit
  • Share Your Experience: A Survey for Latinx Parents
  • Regional Family Meet Up
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What’s Ahead for NTSAD in 2026

October

  • LOTSS Think Tank, October 9
  • Late Onset Supporting the Supporters Zoom Chat, October 8 (second Thursday of each month)
  • Late Onset Zoom Chat, October 26 (last Monday of each month)

November

  • Imagine & Believe, November 12

Join the NTSAD Team!

At NTSAD, we are dedicated to supporting families and advancing research. Join us in making a meaningful impact in the lives of people affected by Tay-Sachs, Canavan, GM1 and Sandhoff diseases.

Current Opportunities:

Administrative Assistant

Director of Development*

(*Previous experience required.)

For more information and to apply, please send a cover letter with salary requirements to jobs@ntsad.org.

**Apply today and become a part of the NTSAD family!**

At NTSAD, You Are Not Alone

Growing Up Rare:
The Sibling Perspective

“…being connected to other [rare] siblings was one of the most important things to have happened to me in my life.” – Esteban Roman