• 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. John Mitakides: TMJ and Cervico-cranial Instability (CCI) in EDS

  • Join us for FREE Webinars 2x/month! On July 16, Dr. Peter Rowe spoke about managing Orthostatic Intolerance in EDS. Learn more about his research in this video.

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Pradeep Chopra: EDS Pain Management (Part 2)

  • Drs. Goldschneider and Neilson of Cincinnati Children's Hospital discuss Pain Management for Ehlers-Danlos Syndrome

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

  • FREE live Webinars offered 2x/month! Watch this presentation by Eric Palmer (Orthotist) about Bracing for EDS

  • Our FREE programs are made possible by BodySupportStore.com - Offering over 250 products recommended for EDSers, by EDSers.

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
Lucy’s Inspirational Video about Ehlers-Danlos Syndrome

Lucy’s Inspirational Video about Ehlers-Danlos Syndrome

Jul 22, 2014

We are tracking Lucy’s progress as an advocate for Ehlers Danlos Syndrome awareness in the UK. Lucy and her dog Molly won the “Friends for Life” award at Crufts. Watch her inspiring video which demonstrates her perseverance and

EDS Awareness Educational Series – September 3, 2014

EDS Awareness Educational Series – September 3, 2014

Jul 21, 2014

  EDS Awareness invites you to attend a FREE online learning session! On September 3, Dr. Anne Maitland speaks about Mast Cell Activation Syndrome in EDS Patients.   Sponsored by www.bodysupportstore.com    WHAT:  “ EDS

“EDS Educational Series” Webinar – August 20, 2014

“EDS Educational Series” Webinar – August 20, 2014

Jul 20, 2014

EDS Awareness invites you to attend a FREE online learning session! On August 20, Dr. Alan Pocinki  speaks about  Chronic Pain, Poor Sleep, Depression, and Fatigue   Sponsored by www.bodysupportstore.com  WHAT:  “ EDS Awareness

Girl with Ehlers Danlos Syndrome Wins Beauty Pageant

Girl with Ehlers Danlos Syndrome Wins Beauty Pageant

Jul 19, 2014

Eleven-year-old Hayley continues to compete in beauty pageants despite her struggles with Ehlers Danlos Syndrome.  Hayley uses this as a platform for fundraising and to spread EDS awareness! It’s a family-orientated competition where

“EDS Awareness Educational Series” Webinar – August 6, 2014

“EDS Awareness Educational Series” Webinar – August 6, 2014

Jul 18, 2014

  EDS Awareness invites you to attend a FREE online learning session! On August 6, Dr. Derek Neilson speaks about “EDS Hypermobility Type and what is needed to change the perception of this condition”.      

“EDS Awareness Educational Series” Webinar – Recording available

“EDS Awareness Educational Series” Webinar – Recording available

Jul 16, 2014

  EDS Awareness invites you to listen to a replay of this FREE online learning session! On July 16, Dr. Peter Rowe spoke about managing Orthostatic Intolerance in EDS.     Sponsored by www.bodysupportstore.com    CLICK HERE

Vote for EDSer Finalist in “Inspire a Future Scientist” Contest

Vote for EDSer Finalist in “Inspire a Future Scientist” Contest

Jul 14, 2014

Claire Seiler was just selected as one of the 10 National Finalists in the “Inspire a Future Scientist” contest, sponsored by 4-H and HughesNet.  She created a video and wrote an essay about what science means to her.  It is very personal to

Exercise and Lifestyle Therapies are Key to Managing POTS

Exercise and Lifestyle Therapies are Key to Managing POTS

Jul 11, 2014

POTS experts, Dr. Blair Grubb and Dr. Geoffrey Heyer, explain the symptoms and treatments.  Studies have indicated that 1 in 4 of those diagnosed with POTS are disabled. Exercise helps by enhancing the effectiveness of the peripheral skeletal

 

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    Upcoming Events

    • EDS Awareness Educational Series — August 6, 2014

      Live Webinar at 7:30 pm, EDT
      Dr. Derek Neilson, Cincinnati Children’s Hospital
      “EDS Hypermobility Type and what is needed to change the perception of this condition”

    • EDS Awareness Educational Series — August 20, 2014

      Live Webinar at 7:30 pm EDT
      Dr. Alan Pocinki, George Washington University Medical Center, discusses – Breaking the cycle of Chronic Pain, Poor Sleep, Depression, and Fatigue

    • EDS Awareness Educational Series — September 3, 2014

      Live Webinar at 7:30 pm EDT
      Dr. Anne Maitland – Director the new Mast Cell Activation Center of New York discusses Mast Cell Activation Syndrome with EDS.