top of page

About Us

This website was created as part of the support group previously named the Australian Ehlers-Danlos Syndrome Association and other associated support groups. Started with two friends who bonded by running our sister group Chiari and Syringomyelia Australia and both discovered they had Ehlers-Danlos. The Australian Ehlers-Danlos support group was started in 2013 to offer support to people with Ehlers-Danlos specifically. 

With over 4000 members in the support group, it is the biggest online Australian support group for Ehlers-Danlos Syndromes and growing daily. We also run a public awareness page (feed on the left) where we post information from sources all over. This is where we have a link to "Visit Group" where you can access our private support group for those diagnosed with any type of Ehlers-Danlos Syndrome or Hypermobile Syndrome Disorder. 

Our Mission 

To help connect and support people in Australia with Ehlers-Danlos Syndrome and Hypermobile Spectrum Disorders. To increase awareness and research of these disorders in Australia 

Our Purpose 

  • To create a not-for-profit for people with Ehlers-Danlos Syndrome in Australia.

  • To be a place of support and hope for patients, use evidence-based research and recruit professionals within Australia to provide information. 

  • Increase awareness within the general public and with health professionals. 

Contact Us

Thanks for submitting!

bottom of page