It’s normal to feel overwhelmed after getting a rare diagnosis. Take some time to absorb the news and process your feelings. When you’re ready, we’ve compiled some resources for families and individuals.
If you’re looking for information on a specific disease, please visit our Diseases page.
While there is currently no cure for Tay-Sachs, Canavan, GM1, or Sandhoff disease, there are treatments to manage symptoms and slow the progression of the disease. Learn about ongoing research and read scientific articles on the allied diseases.
Support for Siblings
Siblings of people with a rare disease have deep feelings, big questions, and serious concerns. These resources help them cope with their unique experience.
Learn more about partners around the world who are helping us fulfil our mission and vision.
Need to Talk?
Our Family Services Team is here to help answer your questions, share relevant information and connect you with our Community.
Director of Family Services
Since 1995, Diana has been supporting individuals and families as they navigate the realities of living with a rare disease.
You can email Diana at firstname.lastname@example.org
Family Services Manager
Since 2014, Becky has been providing personalized support to the NTSAD Community. She joined the Community in 2009 after her daughter, Miss Elliott, was diagnosed with Tay-Sachs.
You can email Becky at email@example.com