Where do I find other people with Tay-Sachs disease?

Support groups can put you in contact with other people or families that have Tay-Sachs disease. Support groups include the National Tay-Sachs & Allied Diseases Association; the Cure Tay-Sachs Foundation; and the Cure & Action for Tay-Sachs Foundation.

There are also online communities for rare disorders such as RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.

Other Questions About Tay-Sachs disease

• Who else in my family should I test for Tay-Sachs disease?
• Where do I find other people with Tay-Sachs disease?
• Where can I get financial help for Tay-Sachs disease?
• Where can caregivers of people with Tay-Sachs disease get support?
• What tests support a diagnosis of Tay-Sachs disease?