NTSAD leads the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1, and Sandhoff diseases
by driving research, forging collaboration, and fostering community.
Supporting families is the center of everything we do.
Join us, learn more, and support our cause.
Natural history studies document the progression of the disease. The more data there is about the progression of the disease from medical data and patient experience, the clearer the endpoints are to determine whether a therapy is working or not. The PIN is a format to help families contribute this information. Therefore, participating in the PIN and natural history studies is important and critical.