Where do I find other people with Ehlers-Danlos syndrome?

Support groups can put you in contact with other people or families that have Ehlers-Danlos syndrome (EDS). Support groups for EDS include the Ehlers-Danlos Society, Ehlers-Danlos Support UK, and the Ehlers-Danlos Syndrome Network C.A.R.E.S. 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 Ehlers-Danlos syndrome, Classic type (type I)

• Will I have all of the symptoms of Ehlers-Danlos syndrome?
• Why is Ehlers-Danlos syndrome called invisible disorder?
• Who else in my family should I test for Ehlers-Danlos syndrome?
• Where do I find other people with Ehlers-Danlos syndrome?
• Where can I get financial help for Ehlers-Danlos syndrome?