• WELCOME! ** Learn about our FREE programs in this fun video! ** It's about empowerment, education, team-building, local support groups... and EDS awareness!

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Henry Burkholder about POTs and EDS

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Jan Dommerholt about Physical Therapy for Ehlers-Danlos

  • Join us for FREE Webinars 2x/month! Watch this presentation by Dr. Anne Maitland focused on Allergies & Mast Cell Activation Syndrome in EDS Patients.

  • FREE Live Webinars offered 2x/month! Watch this presentation by Dr. John Mitakides: TMJ and Cervico-cranial Instability (CCI) in EDS

  • What is Ehlers-Danlos Syndrome? Dr. Henderson & Kristin Means describe the basics of EDS in this TV interview.

  • An aspiring gymnast learns she has Ehlers-Danlos. Not able to compete, her new dream becomes EDS Awareness.

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Is Ehlers-Danlos Syndrome rare - or just rarely diagnosed?

Only 5%
of Ehlers-Danlos Syndrome (EDS) sufferers are correctly diagnosed. It’s been estimated that EDS affects more than 1 in 5,000 people worldwide. But, experts think that's conservative. Each year in the US, 650,000 additional sufferers are un-diagnosed or misdiagnosed due to physician oversight or lack of knowledge about EDS. (According to a study in the UK.)

The mission of EDS Awareness is to ensure greater understanding of Ehlers-Danlos Syndrome, both in the general public and within the medical community. Driven by participation and shared learning, the website content is presented “by EDSers, for EDSers”. We hope to improve the quality of life for individuals affected by EDS – and those who care for them. Tell someone about EDS today!

Directory of Local Support Groups

We help EDSers find or organize support groups in their local communities. Our free program provides each group with a listing on the Support Group Directory and Map, free webpages, coaching, and more... If there is no group in your area, we will help you survey interest and connect with local EDSers. Contact us at info@edsawareness.com for help or to be included in the directory.

Find a support group location by using the interactive map or the look-up menu below.

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Recent Articles
Dr. Forest Tennant webinar on “Intractable Pain in Ehlers-Danlos” – April 7, 2015

Dr. Forest Tennant webinar on “Intractable Pain in Ehlers-Danlos” – April 7, 2015

Mar 6, 2015

Join us for a FREE online learning session! On April 7, Dr. Forest Tennant presents “Centralized Intractable Pain in EDS. Since 1975, his passion is to provide guidance and hope to chronic pain

“The Feldenkrais Method” Webinar by Cynthia Allen on March 17, 2015

“The Feldenkrais Method” Webinar by Cynthia Allen on March 17, 2015

Mar 4, 2015

Join us for a FREE online learning session!    On March 17th, Cynthia Allen, GCFP, STMI presents “The Feldenkrais Method and other Somatic Approaches to Improve Function and Ease”.   Sponsored by www.bodysupportstore.com   

Dr. Mark Lavallee webinar “Exercise is Medicine” – Recording Available

Dr. Mark Lavallee webinar “Exercise is Medicine” – Recording Available

Mar 3, 2015

Join us for a FREE online learning session! On March 3rd, Mark E. Lavallee, M.D presents “Exercise is Medicine – especially for Ehlers-Danlos”. He has EDS, classical type and has lectured at many EDNF

CN Tower Will Have Blue Lights to Commemorate Rare Disease Day

CN Tower Will Have Blue Lights to Commemorate Rare Disease Day

Feb 27, 2015

This Saturday (2/28) Ehlers-Danlos Syndrome Canada will commemorate Rare Disease Day with the lighting of the CN Tower in blue at sundown. EDS is considered to be a rare disease; but experts say it is more prevalent than once thought – because

Rare Disease Month Artwork Includes Ehlers-Danlos

Rare Disease Month Artwork Includes Ehlers-Danlos

Feb 25, 2015

Rare Disease Month brings out the images of those who are struggling with the challenges of Ehlers-Danlos Syndrome and other debilitating disorders. “Beyond the Diagnosis” is an art exhibit that features a piece depicting an EDSer and her

Rare Disease Day is February 28, 2015

Rare Disease Day is February 28, 2015

Feb 22, 2015

The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015! February 23-27 is Rare Disease Week on Capitol Hill. Please join the efforts to raise awareness for

“Orthopaedics & EDS” Webinar by Dr. Howard Epps – Video Recording

“Orthopaedics & EDS” Webinar by Dr. Howard Epps – Video Recording

Feb 17, 2015

Howard R. Epps, MD presents “Orthopaedic Considerations in EDS”. He has lectured at the 2014 EDNF conference.

Ohio State University Women’s Ice Hockey Team held an Ehlers Danlos Syndrome Awareness Night

Ohio State University Women’s Ice Hockey Team held an Ehlers Danlos Syndrome Awareness Night

Feb 15, 2015

              “On February 13, The Ohio State University Women’s Ice Hockey Team held an Ehlers Danlos Syndrome Awareness Night to support their teammate Erin Selfe (10), her family and the EDS Community

 

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    Upcoming Events

    • EDS Awareness Educational Series – March 17, 2015

      Live Webinar at 7:30 pm, EST
      Cynthia Allen, GCFP, STMI presents “The Feldenkrais Method and other Somatic Approaches to Improve Function and Ease”