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.

Other Questions About Turner syndrome

• Will my child outgrow Turner syndrome?
• Will girls with Turner syndrome develop a gonadoblastoma?
• Who else in my family should I test for Turner syndrome?
• Where do I find other people with Turner syndrome?
• Where can caregivers of people with Turner syndrome get support?