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

  • Ehlers-Danlos National Foundation and Dysautonomia International held a joint live webinar, "Connecting the Dots Between EDS and POTS"

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Shweta Dhar, about “Coordination of Care in Adults with EDS”.

  • 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.

  • Our FREE programs are made possible by Body Support Store

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
Take an Ehlers Danlos Survey about Your Experiences as an EDS Patient – LAST DAYS

Take an Ehlers Danlos Survey about Your Experiences as an EDS Patient – LAST DAYS

Oct 30, 2014

Your input is needed for this very important EDS survey! Follow the link at the bottom of this article to take the survey by Oct. 31st. My name is Linda Tao and I am currently studying at Harvard Business School (HBS).  I am conducting a research

A Diagnostic Test for Marfan Syndrome and Other Connective Tissue Disorders

A Diagnostic Test for Marfan Syndrome and Other Connective Tissue Disorders

Oct 28, 2014

In this VIDEO, Dr. Jeff Milunsky describes how a new DNA chip test, CONNECT1, detects multiple mutations that are diagnostic for connective tissue disorders such as Marfan, Ehlers-Danlos, and Loeys-Dietz syndromes. Dr. Jeff Milunsky is the

EDS Awareness Educational Series – November 19, 2014

EDS Awareness Educational Series – November 19, 2014

Oct 27, 2014

  Join us for a FREE online learning session!    On November 19, Dr. Frank Gargano presents “Dry Needling for EDS Pain Management: Can muscle performance be improved?” His dry needling approach concentrates not ONLY on

Dr. Peter Rowe – “Is The Physical Examination Normal in Chronic Fatigue Syndrome?”

Dr. Peter Rowe – “Is The Physical Examination Normal in Chronic Fatigue Syndrome?”

Oct 24, 2014

Dr. Peter Rowe discusses 3 areas of dysfunction often found in Chronic Fatigue Syndrome patients —circulatory disturbances, joint hypermobility, and movement restrictions. These appear to have some commonality with Ehlers-Danlos Syndrome.

“Coordination of Care in Adults with EDS” – Dr. Shweta Dhar – RECORDING AVAILABLE

“Coordination of Care in Adults with EDS” – Dr. Shweta Dhar – RECORDING AVAILABLE

Oct 22, 2014

  Join us for a FREE online learning session!  On October 15, Dr. Shweta Dhar, Medical Director of Adult Genetics at Baylor College of Medicine, spoke about “Coordination of Care in Adults with EDS”.   Sponsored by 

Take Survey on Gastrointestinal Issues with Ehlers-Danlos Syndrome or CTDs—Harvard researchers need your help!

Take Survey on Gastrointestinal Issues with Ehlers-Danlos Syndrome or CTDs—Harvard researchers need your help!

Oct 21, 2014

Your input is needed for this very important EDS survey! Follow the link at the bottom of this article to take the survey. This survey on gastrointestinal issues is being conducted by a group of doctors at Beth Israel Deaconess Medical Center

Brynn Is Allergic to the World — Despite Ehlers-Danlos & MCA — She is Making It A Better Place!

Brynn Is Allergic to the World — Despite Ehlers-Danlos & MCA — She is Making It A Better Place!

Oct 20, 2014

Brynn struggles with EDS, MCA and POTs, but she’s passionate about spreading awareness through social media. She believes in “the power of positivity and speaking out about her own experience”.   “At just

EDS Awareness Educational Webinar – November 5, 2014

EDS Awareness Educational Webinar – November 5, 2014

Oct 19, 2014

  Join us for a FREE online learning session!    On November 5, Dr. Diana Lebron, a Neurology and Headache Specialist at LeBonheur Childrens Hospital, speaks about “Headaches and Ehlers-Danlos Syndrome“.   Sponsored

 

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    Upcoming Events

    • NEEDED: EDSers to Take Survey on EDS Patient Experience

      Deadline: October 31, 2014
      Take this EDS Survey
      Linda Tao, Researcher from Harvard

    • EDS Awareness Educational Series – November 5, 2014

      Live Webinar at 7:30 pm, EDT
      Diana Lebron, MD
      Neurology & Headache Specialist
      “Headaches and Ehlers-Danlos Syndrome“

    • Joint Meeting of the EDS & Marfan New England Groups November 9, 2014

      1 PM to 5 PM
      Joint Meeting of the Ehlers-Danlos New England/Massachusetts Support Group and the Massachusetts Chapter of the Marfan Foundation

    • EDS Awareness Educational Series – November 19, 2014

      Live Webinar at 7:30 pm, EST
      Frank Gargano, DPT presents “Dry Needling for EDS Pain Management”