Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

How can I get involved?

There are many ways to contribute to research. Whenever we learn about a new and appropriate study that is recruiting patients, we update the list below. Participating in research is a personal decision, and not one which every family feels is right for them. If you are considering participating in a research study, you are welcome to call NTSAD to discuss the benefits and risks. 


RDMD for GM1 Gangliosidosis

You can accelerate drug development in GM1 (GM1 gangliosidosis). Important research records are trapped in hospitals across the country. As a result, drug researchers can’t access the information they need to advance treatments. But as a patient, you can. Unlock your records and contribute them to research, privately and securely.

To learn more about how it works, watch the webinar with RDMD, NTSAD and Cure GM1 here. Join the program here in just 10 minutes!  

Patient Insights Network (PIN)

The following PINs have been set up in collaboration with Canavan Research Illinois, the Canavan Foundation and the Cure GM1 Foundation respectively. A GM2 (Tay-Sachs, Sandhoff) will be established soon as a collaboration with the Cure Tay-Sachs Foundation.

Canavan Patient Insights Network (PIN) - Join here.

GM1 Patient Insights Network (PIN) - Join here.

GM2 Patient Insights Network (PIN) - Join here.


Studies Recruiting Patients

Funding Research

family raising funds with a bake saleYou do not have to participate in a study to be involved with research. Raising money for research is a vital way for research to continue moving forward.

Tissue Donation

If a loved one has passed away and you would like to help research progress to help others fight the disease, you may consider tissue donation. This is a private and personal decision.