Tay-Sachs disease

Organizations

Are there good support groups for Tay-Sachs disease?

There are several support groups or organizations for Tay-Sachs disease that provide support, information, advice, referrals to physicians and medical centers, and up-to-date information on research and treatments. Support groups for Tay-Sachs disease include: the National Tay-Sachs & Allied Diseases Association; the Cure Tay-Sachs Foundation; and the Cure & Action for Tay-Sachs Foundation.

References
  • Tay-Sachs Disease. The National Organization for Rare Disorders website. Accessed September 20, 2016. http://rarediseases.org/rare-diseases/tay-sachs-disease/
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Where do I find other people with Tay-Sachs disease?

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.

References
  • Kaback MM, Desnick RJ. Hexosaminidase A Deficiency. GeneReviews website. Accessed September 20, 2016. http://www.ncbi.nlm.nih.gov/books/NBK1218/
  • Tay-Sachs Disease. The National Organization for Rare Disorders website. Accessed September 20, 2016. http://rarediseases.org/rare-diseases/tay-sachs-disease/

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