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


Despite position statements from the American College of Obstetricians and Gynecologists (ACOG) stating it is a basic standard of care to screen persons of French-Canadian, Louisiana-Cajun and Ashkenazi Jewish descent for Tay-Sachs, some may have issues with getting coverage for carrier screening. NTSAD can help you appeal for coverage and at the same time educate the healthcare industry about the importance of genetic testing prior to conception.

If you are having problems with insurance covering your carrier test, please contact the office at (617) 277-4463 or This email address is being protected from spambots. You need JavaScript enabled to view it. for assistance with the appeal. We will need your name, address and plan number. The office will provide a letter of support to your insurance company as well as educational materials to present to their medical review team.

It is important to note that while the appeal process and potential out-of-pocket cost of genetic testing may seem daunting, it is a drop in the bucket compared to caring for a child affected by Tay-Sachs, Canavan or another allied disease.