support and organizations
- For people diagnosed with or affected by Tay-Sachs, there are a number of websites where they can glean information, find advice, and share their story. People who are new to the disease can learn in-depth information about their condition from sites belonging to organizations like the National Tay-Sachs and Allied Diseases Association. This website also offers information on the Annual Family Conference, a place to connect with others in their situation and learn about current research, and Benton's Family Assistance Fund, created to allow families to purchase things for the comfort and welfare of their affected individual. People are able to attend the conference through the Helping Hand Grant program. Other sites, like the Late Onset Tay-Sachs Research and Education Foundation allow adults with Tay-Sachs to share their journey with the disease.
- There are a multitude of organizations connected to Tay-Sachs disease, some of which we have already mentioned: The National Tay-Sachs and Allied Diseases Association, the Late Onset Tay-Sachs Research and Education Foundation, the Helping Hand Grant Program, the Cure Tay-Sachs Foundation, March of Dimes Births Defects Foundation, National Institute of Child Health and Human Development, the National Institute of Neurological Disorders and Stroke, the Genetic Alliance, the National Organization for Rare Disorders, Genetic and Rare Diseases Information Center, e.t. al.