• 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,

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Derek Neilson about “EDS Hypermobility Type and what is needed to change the perception of this condition”

  • 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 via the

  • Our FREE programs are made possible by

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
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 21, 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

Concern Over Subsidised Water Bills for Ehlers Danlos Syndrome

Concern Over Subsidised Water Bills for Ehlers Danlos Syndrome

Oct 17, 2014

This Irish mother feels the uncertainty over special water allowance limits are an “insult to the ill”. Her daughter, Lauren, has EDS and intestinal failure. It requires extensive water usage to manage her condition. The government

EDS & POTs EDNF Webinar – Recording Available

EDS & POTs EDNF Webinar – Recording Available

Oct 16, 2014

Listen to this webinar about EDS and POTS. Also, watch another video of Dr. Rowe's webinar for EDS Awareness Educational Series presented in July

EDS Awareness Educational Series – October 15, 2014

EDS Awareness Educational Series – October 15, 2014

Oct 15, 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 

Maddison Parker Meets with Australia’s Prime Minister to Discuss Ehlers Danlos Syndrome

Maddison Parker Meets with Australia’s Prime Minister to Discuss Ehlers Danlos Syndrome

Oct 13, 2014

Maddison is at it again!  This ambitious 11-year-old had a successful meeting with Australia’s Prime Minister! She asked for five minutes and got 30! She feels she got her message across and that it will yield positive results in

Take an Ehlers Danlos Survey about Your Experiences as an EDS Patient

Take an Ehlers Danlos Survey about Your Experiences as an EDS Patient

Oct 11, 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

T-shirt purchases will help fund EDS Awareness Educational Program

T-shirt purchases will help fund EDS Awareness Educational Program

Oct 9, 2014

  These T-shirts will support 2 good causes! $10 of every shirt sold will be split between the EDS Awareness Free Webinar program & Dr. Robert Nussbaum’s EDS research at UCSF.   The EDS Awareness funds will be used for webinars

 

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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“

    • Abilities Expo is a CELEBRATION of what you CAN DO

      November 21 – 23, 2014 in the Bay Area
      Abilities Expo is a CELEBRATION of what you CAN DO