Diseases

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

Family Support

Connect with our Family Services Team 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 our Community Newsletter.

June 2026 Issue

NTSAD Community Connections

In this Issue:

  • Azafaros RAINBOW Study Results Published!
  • Newly Published GM1 Biomarker Study
  • NTSAD Recognizes Three Amazing Board Members
  • NTSAD Welcomes Three New Board Members
  • 16th Annual Day of Hope
  • Join us for Imagine & Believe 2026!
  • Register Now for Rare Across America
  • Upcoming Webinar: SitNStand for NTSAD
  • NORD Support: Understanding Medicaid Changes
  • Congratulations Are in Order!
  • Mission Moment
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What’s Ahead for NTSAD in 2026

July

  • Independence Day
  • Late Onset Supporting the Supporters Zoom Chat July 9 (second Thursday of each month)
  • Late Onset Zoom Chat July 27 (fourth Monday of each month)

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

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

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