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

  • Join us for FREE Webinars 2x/month! Watch this presentation by Dr. Derek Neilson about "EDS Hypermobility Type & what is needed to change the perception of this condition"

  • Join us for FREE Webinars 2x/month! Watch this presentation by Dr. Peter Rowe: Managing Orthostatic Intolerance in EDS

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

  • 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 via the "Life as a Zebra" organization. This is the story of Katie Dama Jaskolski:

  • Our FREE programs are made possible by BodySupportStore.com Offering over 250 products recommended for EDSers, by EDSers. Please check out these helpful products at lowest-allowable prices.

WELCOME to the EDS Awareness website!
Watch this video to learn about our FREE educational sessions & support groups!


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
EDS Awareness Educational Series – September 3, 2014

EDS Awareness Educational Series – September 3, 2014

Aug 31, 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

10-year-old Boy with Ehlers Danlos Inspires Hospital Staff

10-year-old Boy with Ehlers Danlos Inspires Hospital Staff

Aug 30, 2014

Toby Skerman has been promoting EDS Awareness in the UK.  This 10-year-old boy who is a patient at Great Ormond Street Hospital has inspired staff to raise funds for his wheelchair. By: Mid Sussex Times Toby Skerman, of Uckfield, has inspired

EDS Awareness Educational Series – September 17, 2014

EDS Awareness Educational Series – September 17, 2014

Aug 29, 2014

  EDS Awareness invites you to attend a FREE online learning session! On September 17,  Dr. Richard Barnum speaks about “Psychiatric illness with EDS Patients - Connections and Confusion”.   Sponsored

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

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

Aug 28, 2014

  REGISTER BY 8/29 FOR A DISCOUNTED RATE.  Join us on Saturday, September 13, 2014  in Manchester, NH.  A full day discussion for patients, family, and healthcare professionals addressing Marfan Syndrome, Ehlers-Danlos, Loeys-Dietz

Ehlers Danlos Syndrome Featured in TV News Story – Watch Video

Ehlers Danlos Syndrome Featured in TV News Story – Watch Video

Aug 27, 2014

Megan is a talented artist with Hypermobile EDS. Watch her video story featured on a Philadelphia TV news station.  This is a good example of how patients can spread awareness of Ehlers Danlos Syndrome in their local communities. Watch the video

Irish Brothers raise awareness of Ehlers Danlos Syndrome

Irish Brothers raise awareness of Ehlers Danlos Syndrome

Aug 23, 2014

The Barrett family is determined to raise awareness of Ehlers Danlos Syndrome in Ireland. Their three boys have all been struck with EDS. They were fortunate to see world-renowned EDS expert, Dr. Rodney Grahame. However, medical treatments can

“EDS Educational Series” Webinar – Recording Available

“EDS Educational Series” Webinar – Recording Available

Aug 20, 2014

EDS Awareness invites you to listen to a FREE online learning session! On August 20, 2014 Dr. Alan Pocinki  gave a presentation about  Chronic Pain, Poor Sleep, Depression, and Fatigue in EDS.  Dysautonomia was also addressed in this context.

How to Help Your Ehlers-Danlos Caregiver

How to Help Your Ehlers-Danlos Caregiver

Aug 16, 2014

Caregivers are the unsung heroes in the life of the chronically ill.  They offer critical support for patients living with Ehlers Danlos Syndrome.  Learn 7 practical ways you can appreciate your caregiver and help them manage their

 

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    Upcoming Events

    • EDS Awareness Educational Series — September 3, 2014

      Live Webinar at 7:30 pm, EDT
      Dr. Anne Maitland
      Director, Mast Cell Activation Center of NY
      “Mast Cell Activation Syndrome in EDS”

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

      September 13, 2014 at 8 AM – 4 PM
      Best Western Executive Court Inn/Conf. Ctr.
      Drs. Hal Dietz and Brad Tinkle will speak

    • EDS Awareness Educational Series – September 17, 2014

      Live Webinar at 7:30 pm, EDT
      Dr. Richard Barnum speaks about “Psychiatric illness with EDS Patients”