• 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 our keynote presentation by Dr. Brad Tinkle about Ehlers-Danlos Syndrome.

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Patrick Agnew about Foot & Ankle Issues with EDS.

  • 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.

  • FREE Live Webinars offered 2x/month! Watch this presentation by Dr. John Mitakides: “Musculoskeletal Headaches in EDS”.

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

  • Watch this EDS patient's in-depth explanation of Ehlers-Danlos Syndrome and how she tackles her illness with a positive outlook.

  • 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.

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
Free Webinar: “Support Groups for Ehlers-Danlos Syndrome” by John Ferman – August 4, 2015

Free Webinar: “Support Groups for Ehlers-Danlos Syndrome” by John Ferman – August 4, 2015

Jul 28, 2015

Join us for a FREE online learning session!  On August 4, 2015, John Ferman presents “Support Groups for Ehlers-Danlos Syndrome”.   Sponsored by www.bodysupportstore.com  WHEN: Tuesday, August 4, 2015  at 7:30-9:30pm, EDT TOPIC:

Physical Therapy Book Published – “Living Life to the Fullest with Ehlers-Danlos Syndrome”

Physical Therapy Book Published – “Living Life to the Fullest with Ehlers-Danlos Syndrome”

Jul 27, 2015

  Kevin Muldowney, MSPT has just published a book for people with Ehlers-Danlos Syndrome entitled, “Living Life to the Fullest with Ehlers-Danlos Syndrome.” This book outlines what a person with EDS needs to do in order to live a

Dr. John Mitakides Webinar: “Musculoskeletal Headaches in EDS” – Recording Available

Dr. John Mitakides Webinar: “Musculoskeletal Headaches in EDS” – Recording Available

Jul 21, 2015

Watch this FREE online learning session!        Dr. John Mitakides presents “Musculoskeletal Headaches in EDS”.   Sponsored by www.bodysupportstore.com    TOPIC: “Musculoskeletal Headaches in EDS”   PRESENTER:

Being Your Own Advocate for Your Rare Health Condition

Being Your Own Advocate for Your Rare Health Condition

Jul 20, 2015

By Jonathan Rodis. Edited by Sue Hagen. Being your own advocate not only improves the quality of your care in the future, but also provides your local caregivers, physicians and hospital staff a better

Disconnnected… Ehlers-Danlos syndrome: Some symptoms point to a need for greater awareness among dental professionals

Disconnnected… Ehlers-Danlos syndrome: Some symptoms point to a need for greater awareness among dental professionals

Jul 17, 2015

By Judith M. Stein, RDH. Ehlers-Danlos syndrome (EDS) was not only "under my knowledge radar," it wasn't even on my screen of awareness. What launched this syndrome into my awareness was a community tragedy

EDS Awareness Shirts -– only $10 each!

EDS Awareness Shirts -– only $10 each!

Jul 13, 2015

Now available at www.bodysupportstore.com --- Zebra Shirts for awareness are only $10 each! This is the perfect way to communicate our EDS Awareness message during our awareness activities or the conference in

Dr. Patrick Agnew presents “Foot & Ankle Issues with EDS” – Recording Available

Dr. Patrick Agnew presents “Foot & Ankle Issues with EDS” – Recording Available

Jul 7, 2015

Watch this FREE learning session! Dr. Patrick Agnew presents “Foot & Ankle Issues in EDS”. Click here for the video

Shea overcomes Ehlers-Danlos Syndrome in the Pool

Shea overcomes Ehlers-Danlos Syndrome in the Pool

Jul 4, 2015

9-year-old Shea has discovered that swimming reduces his EDS pain. Aquatic activity is one of the best exercises for those with Ehlers-Danlos Syndrome. Shea Sargent is only 9-years old, but

 

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    Upcoming Events

    • August 4, 2015: Free Webinar – “Support Groups for Ehlers-Danlos Syndrome”

      Live Webinar at 7:30 pm EDT
      John Ferman presents “Support Groups for Ehlers-Danlos Syndrome”

    • EDNF Conference in Baltimore August 13-15

      Ehlers-Danlos National Foundation Learning Conference in Baltimore August 13-15.