• 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. Brad Tinkle about Introduction to Ehlers-Danlos Syndrome

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Derek Neilson about EDS Hypermobility 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.

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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 – Chiari Unite@Night Walks in Ohio

EDS – Chiari Unite@Night Walks in Ohio

May 24, 2015

    - - - - - - - - - - - - - - - The Cincinnati, OH Ehlers-Danlos / Chiari unite@night walk will be held on May 30th.  Please join us! (see flyer for details) _ EDS – CSF’s unite@night walks bring together the families and

Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome

Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome

May 24, 2015

Ehlers-Danlos may be considered a “rare” disorder but many doctors indicate that it is just “rarely properly diagnosed”. Sue Kiesewetter, Enquirer contributor FAIRFIELD TWP. – Seventeen-year-old Elizabeth “Wizzy”

McCullough Students Sing to Help Girl with Ehlers-Danlos Syndrome

McCullough Students Sing to Help Girl with Ehlers-Danlos Syndrome

May 22, 2015

Very talented students raising funds and providing awareness for a child with Ehlers-Danlos Syndrome  By Nora Olabi     McCullough Junior High School choir students raised thousands of dollars during their third annual pop concert

EDS – Chiari Walk & Run in Milford, CT

EDS – Chiari Walk & Run in Milford, CT

May 21, 2015

EDS – Chiari Walks are being planned for EDS Awareness. Here is a well-organized walk that received newspaper coverage in Milford, CT. The original article is printed in the May 13th Edition of the Citizen News. Article and Photo by Alicia

Free Webinar: “Introduction to Ehlers-Danlos Syndrome” by Dr. Brad Tinkle – Recording Available

Free Webinar: “Introduction to Ehlers-Danlos Syndrome” by Dr. Brad Tinkle – Recording Available

May 19, 2015

Watch this FREE video presentation! Dr. Brad Tinkle presents “Introduction to Ehlers-Danlos Syndrome”.   Sponsored by www.bodysupportstore.com     _  Click here for the recording of this presentation _  Click here for the slides

Free Webinar: “Mast Cell Disorders” by Dr. Theoharis Theoharides – June 2, 2015

Free Webinar: “Mast Cell Disorders” by Dr. Theoharis Theoharides – June 2, 2015

May 15, 2015

Join us for a FREE online learning session!    On June 2, Dr. Theoharis Theoharides presents “Mast Cell Disorders”   Sponsored by www.bodysupportstore.com    WHEN: Tuesday, June 2, 2015  at 7:30-9:30pm, EST  

Henry Has Classical Ehlers-Danlos Syndrome

Henry Has Classical Ehlers-Danlos Syndrome

May 13, 2015

By: Malorie Maddox Henry and his family are struggling with Classical Ehler-Danlos Syndrome.  It took a year to get it diagnosed and they now know what it is. His parents can now better care for him.  Their one-year-old was constantly covered in

New Program for Vascular Ehlers-Danlos Syndrome

New Program for Vascular Ehlers-Danlos Syndrome

May 10, 2015

Vascular Ehlers-Danlos Syndrome is the most devastating of the various types of EDS.  By Candice Monhollan, cmonhollan@ 21st-centurymedia.com It’s a disease so rare that only one out of every 250,000 people will be diagnosed with it. But for West

 

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    Upcoming Events

    • Free Webinar: “Mast Cell Disorders” by Dr. Theoharis Theoharides – June 2, 2015

      Live Webinar at 7:30 pm EDT
      Dr. Theoharis Theoharide presents “Mast Cell Disorders” – June 2, 2015