Florida Institute for Pediatric Rare Diseases
The Economic Burden of Rare Diseases
Umass- Gene Therapy for Tay-Sachs Disease
The Cost of Delayed Diagnosis
Powel Center for Gene Therapy
U.S. NATIONAL LIBRARY OF MEDICINE
Provides resources for understanding genetic conditions.
CURE TAY-SACHS FOUNDATION (CTSF)
Since 2017, CTSF has raised over $4 million from kind and generous donors.
CTSF have issued research grants to nine researches/laboratories around the world, and made impressive progress toward the cure of Tay-Sachs.
NATIONAL TAY-SACHS & ALLIED DISEASES ASSOCIATION (NTSAD)
National Tay-Sachs & Allied Diseases Association (NTSAD) is one of the oldest patient advocacy groups in the country. We focus on funding research, supporting over 500 families and individuals worldwide, and raising awareness to prevent disease.
Today, NTSAD is recognized as a leading non-profit patient group with a demonstrated commitment to service, science and support. NTSAD gives help and hope to thousands of individuals and families from many backgrounds and ethnicities who have been or are affected by Tay-Sachs, Canavan and related genetic diseases all over the world.
