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.

NTSAD Community Connections

September 2026 Issue:
  • Extremely High Canavan Carrier Frequency in a South Indian Community
  • New NIH Study Compares Late-Onset Tay-Sachs to Late-Onset Sandhoff
  • Volunteers Needed for Canavan Disease Study
  • Carrier Screening: What Families and Providers Need to Know
  • Move a Mile for Day of Hope: Saturday, September 19
  • Want to Share Your Story?
  • Join Us for Imagine & Believe 2026
  • Drive FORE Dylan 2026
  • NTSAD Community Voices: The Reality of Rare Disease and Back-to-School
  • Caring for the Whole Family: NTSAD’s New Sibling Support Guide
  • Grief and Giving Back: Honoring Greyson’s Legacy
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What’s Ahead for NTSAD in 2026

September

  • GM2 Awareness Month
  • Leukodystrophy Awareness Month
  • Newborn & Carrier Screening Awareness Month
  • Carrier Screening Webinar, September 10
  • Late Onset Supporting the Supporters Zoom Chat, September 10 (second Thursday of each month)
  • NTSAD 69th Anniversary, 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 (last Monday of each month)

October

  • LOTSS Think Tank, October 9

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