National Tay-Sachs & Allied Diseases Association

The Power of Community

Diseases

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

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Research

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NTSAD News & Events

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May 2024 Issue

Community News

In this Issue:

Research Updates

  • ASGCT Conference
  • Sanofi GM2 Trial Discontinued
  • GM1 Awareness Day
  • School Supports Rare Family
  • Connecting with Families
  • Fall Family Meet Up
  • Day of Hope 2024
  • NTSAD Staffing News
  • Imagine & Believe and 47th Annual Family Conference
On February 15, the GM2 Community shared their experiences of living with Tay-Sachs and Sandhoff diseases during the first-ever, Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting with the FDA.

You can watch a recording of the GM2 EL-PFDD Meeting here.

Stay tuned for the summary of this first-ever meeting in the “Voice of the Patient” report in the late spring/early summer.

On Thursday, November 10, 2022, the NTSAD Community will gather at the Royal Sonesta in Boston for the first in-person Imagine & Believe event in three years to commemorate NTSAD’s 65th Anniversary.

We Care for Rare

Jessie Jackson
Juvenile GM1 Disease

“Jessie (age 30) loves going on adventures! Like going to Nitro Harley Racing. She is not about to let GM1 keep her from LIVING life!”

Merlie Jackson, Jessie’s Mom