• FREE live Webinars offered 2x/month! Watch a presentation by John Ferman - Support Groups for EDS

  • 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.

  • "Issues with My Tissues" The Lara Bloom Story

  • 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
EDS Survey Results will be presented on May 17, 2016

EDS Survey Results will be presented on May 17, 2016

May 3, 2016

STATUS: World-wide EDS Awareness Survey — A summary booklet is currently being distributed to doctors and attendees at the EDSI Symposium in New York City. We received > 2500 responses from 26 countries. The data collected from this survey

Free Webinar: “Cognitive Behavioral Therapy as a Coping Skill for EDS”

Free Webinar: “Cognitive Behavioral Therapy as a Coping Skill for EDS”

May 3, 2016

Check back for the recording of this FREE online learning session on Cognitive Behavioral Therapy (CBT) that was presented on May 3rd. TOPIC: “Cognitive Behavioral Therapy as a Coping Skill for EDS” PRESENTER: Sara Williams, Ph.D.

New Awareness Materials for EDS — “Hiding in Plain Sight” Brochure. NOW you can print through Vistaprint!

New Awareness Materials for EDS — “Hiding in Plain Sight” Brochure. NOW you can print through Vistaprint!

May 1, 2016

Available now to print through Vistaprint! This new EDS brochure is designed for general awareness of EDS. It's suitable for doctors, teachers, and relatives who just don’t "get it".

My Wife Had EDS and Did  Not Know IT! – 8th Year Anniversary

My Wife Had EDS and Did Not Know IT! – 8th Year Anniversary

Apr 21, 2016

  This website and its free programs are dedicated to the memory of Carol and thousands like her – who suffer from undiagnosed Ehlers-Danlos…  We were married for 41 years.  You’d think that after all of that time you would know

Free Webinar: “Mast Cell Activation Syndrome in EDS Patients (Part 2)” – Recording Available

Free Webinar: “Mast Cell Activation Syndrome in EDS Patients (Part 2)” – Recording Available

Apr 19, 2016

Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com  . . . . TOPIC:  “Mast Cell Activation Syndrome in EDS Patients (Part 2)” . . PRESENTER:   Anne Maitland, MD, PhD – Director for Comprehensive

EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”

EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”

Apr 15, 2016

Click here to learn about the PT book that is helping EDSers throughout the US! For every purchase made through the following link, $1.00 will be donated to EDS Awareness programs.

Registration Process for Webinars

Registration Process for Webinars

Apr 10, 2016

NOTE:  Please register early. A limited number may attend live, and a free recording of the entire session will be provided for later replay.   Instructions: – When you click the “registration link” on the announcement page,

Hypermobile EDS Educational Session – April 21, 2016

Hypermobile EDS Educational Session – April 21, 2016

Apr 2, 2016

Hypermobile Ehlers-Danlos Syndrome Educational Session at Cincinnati Children’s Hospital Medical Center Please join us for an hour long session hosted by Dr. Derek Neilson discussing the diagnosis and management of hypermobile Ehlers-Danlos

 

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    Upcoming Events

    • Free Webinar: “Cognitive Behavioral Therapy as a Coping Skill for EDS”

      Tuesday May 3, 2016
      Live Webinar at 7:30 pm EDT
      Sara Williams, Ph.D. presents “Cognitive Behavioral Therapy as a Coping Skill for EDS”

    • Educational Session – “Support Groups for Ehlers-Danlos Syndrome”

      Listen to this FREE session anytime!