Turner syndrome

Organizations

Are there good support groups for Turner syndrome?

There are a few support groups or organizations for Turner syndrome. These groups provide support, information, advice, referrals to physicians and medical centers, and up-to-date information on research and treatments. Support groups for Turner syndrome include the Turner Syndrome Society of the United States, Turner Syndrome Foundation, The Turner Syndrome Society of Canada, and the Turner Syndrome Support Society of the UK.

The Turner Syndrome Society of the United States provides a detailed guide for families who have received a diagnosis of Turner syndrome.

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Where do I find other people with Turner syndrome?

Where do I find other people with Turner syndrome?

Support groups can put you in contact with other people or families that have Turner syndrome. Support groups for Turner syndrome include: the Turner Syndrome Society of the United States, Turner Syndrome Foundation, The Turner Syndrome Society of Canada, and the Turner Syndrome Support Society of the UK.

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. Facebook and other social media websites often have groups for people looking to meet and share experiences with other people or families with the same diagnosis.

References
  • Turner Syndrome. The National Organization for Rare Disorders website. https://rarediseases.org/rare-diseases/turner-syndrome/
  • The RareConnect website.
  • The RareShare website
  • Inspire website.

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