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.

We Are Hiring!

NTSAD is hiring a part-time Patient Education and Advocacy Lead to join our team. This role focuses on coordinating and advancing NTSAD’s patient education, advocacy, patient registry, and research engagement initiatives.

August 2026 Issue

NTSAD Community Connections

In this Issue:

  • An Important Milestone for the GM2 Community
  • Exciting Research Discovery in Sandhoff Disease!
  • Announcing Our New Blog: NTSAD Community Voices
  • Move a Mile for Day of Hope: Saturday, September 19, 2026
  • Join Us for Imagine & Believe 2026!
  • We’d Love to See You in Fort Lauderdale this September!
  • Growing Up Rare: The Sibling Perspective
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What’s Ahead for NTSAD in 2026

August

  • Late Onset Supporting the Supporters Zoom Chat August 13 (second Thursday of each month)
  • Late Onset Zoom Chat, August 24 (fourth Monday of each month)

September

  • GM2 Awareness Month
  • Leukodystrophy Awareness Month
  • Newborn Screening Awareness Month
  • Labor Day, September 7
  • Carrier Screening Webinar, September 10
  • Late Onset Supporting the Supporters Zoom Chat, September 10 (second Thursday of each month)
  • Happy 69th Birthday, NTSAD, September 11
  • Day of Hope, September 19
  • Regional Family Meetup, Fort Lauderdale, September 19-20
  • Canavan Think Tank, September 24
  • Late Onset Zoom Chat, September 28 (fourth Monday of each month)

October

  • LOTSS Think Tank, October 9
  • …more to come

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