• 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
5th Annual New England Marfan Syndrome and Connective Tissue Disorders Symposium

5th Annual New England Marfan Syndrome and Connective Tissue Disorders Symposium

Jul 30, 2014

  WHEN Saturday September 13, 2014 8:00 AM – 4:00 PM WHERE Best Western Executive Court Inn and Conference Center 13500 South Willow Street Manchester, NH 03103 QUESTIONS? Rene Jones or Kaddy Ackroyd coordinator@nhvtmarfan.org REGISTER

Ehlers Danlos Grad Eyes a Career in Nursing

Ehlers Danlos Grad Eyes a Career in Nursing

Jul 29, 2014

Lauren is thankful for the nurses who helped with her Ehlers Danlos Syndrome and many surgeries. She says, “I just want to pay that back and help other people.” She plans to go to nursing school. Despite her own struggles,

TV Character with Ehlers Danlos Syndrome becoming a Mother on Coronation Street

TV Character with Ehlers Danlos Syndrome becoming a Mother on Coronation Street

Jul 28, 2014

“Coronation Street” is a important TV program for EDS awareness in the UK. A new storyline depicts the character “Izzy” as a newly-pregnant woman with Ehlers Danlos Syndrome.  This will help the public understand EDS

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

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

Jul 27, 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”.      

Australia’s 1st Ehlers Danlos Syndrome Conference was Attended by 300

Australia’s 1st Ehlers Danlos Syndrome Conference was Attended by 300

Jul 26, 2014

It was a well-attended 3-day event!  Australia’s First EDS Conference attracted EDS experts, including physiotherapists, cardiologists, gastroenterologists, and US Geneticist Dr. Brad Tinkle. “Parramatta welcomed the first national

Emma is Raising Awareness of Hypermobility Syndrome

Emma is Raising Awareness of Hypermobility Syndrome

Jul 25, 2014

This upbeat UK teenager has overly flexible joints and chronic pain. Emma hopes to use her experience to raise awareness of Hypermobility Syndrome and help give back. “An inspirational teenager is hoping to raise awareness of a debilitating

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

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

Jul 23, 2014

Claire Seiler created a video for her 4-H contest. Supporters can vote once per day through Aug. 1st. This 16-year-old EDSer is interested in tissue engineering to find a way to engineer collagen. The winner of this contest will receive a

“EDS Educational Series” Webinar – August 20, 2014

“EDS Educational Series” Webinar – August 20, 2014

Jul 21, 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

 

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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.

    • 5th Annual New England Marfan Syndrome and Connective Tissue Disorders Symposium

      Saturday September 13, 2014 8:00 AM – 4:00 PM
      Best Western Executive Court Inn and Conference Center
      Drs. Hal Dietz and Brad Tinkle are the keynote speakers.