• 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
Hole in the Wall Gang Camp

Hole in the Wall Gang Camp

Feb 4, 2016

The Hole in the Wall Gang will be hosting a Rare Disease Summer Family Camp June 2-5 at Hole in the Wall.  Children with Ehler’s Danlos and their families will be eligible for this session.  In addition we also will host a General Family

Free Webinar:  “Physical Therapy for Ehlers-Danlos Syndrome” with Trish Meegan, DPT – Recording Available

Free Webinar: “Physical Therapy for Ehlers-Danlos Syndrome” with Trish Meegan, DPT – Recording Available

Feb 3, 2016

Watch the recording of this free webinar.     Sponsored by www.bodysupportstore.com  TOPIC:  “Physical Therapy for EDS: Including how your posture and thorax/ribcage affects your PT program” PRESENTER: Trish Meegan, DPT, L, ATC

Free Webinar – “Soft Tissue Surgery in Collagen Disease (for EDS Feet & Ankles)” – Recording Available

Free Webinar – “Soft Tissue Surgery in Collagen Disease (for EDS Feet & Ankles)” – Recording Available

Jan 20, 2016

Watch the recording of this free webinar – – Sponsored by www.bodysupportstore.com  – Topic – “Soft Tissue Surgery in Collagen Disease (for EDS Feet & Ankles)” – Presenter – Dr. Patrick Agnew  

Free Webinar – “Tethered Cord Syndrome in Ehlers-Danlos” – Recording Available

Free Webinar – “Tethered Cord Syndrome in Ehlers-Danlos” – Recording Available

Jan 5, 2016

Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com TOPIC: “Tethered Cord Syndrome in Ehlers-Danlos” PRESENTER: Petra Klinge, MD, PhD Click here for a link to this recording Click here for a link to the

The Reality of Ehlers-Danlos Syndrome

The Reality of Ehlers-Danlos Syndrome

Dec 17, 2015

After 22 years looking for answers, Kara LaFache has finally been diagnosed with Ehlers-Danlos Syndrome. Watch this video TV news report, which brings awareness to the multi-systemic and disabling aspects of EDS. Spread awareness yourself with

“Issues with My Tissues” – The Lara Bloom Story

“Issues with My Tissues” – The Lara Bloom Story

Nov 29, 2015

“Issues with My Tissues” is a Documentary Video produced in the UK by CommunityChannelTV about Lara Bloom who has Ehlers-Danlos Syndrome.   Caution: This program discusses “exercises” that many with EDS should

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!

Nov 25, 2015

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".

Free Webinar: “Physical Therapy Protocol for Ehlers-Danlos Syndrome” – Recording Available

Free Webinar: “Physical Therapy Protocol for Ehlers-Danlos Syndrome” – Recording Available

Nov 24, 2015

Watch the recording of this free webinar. When you purchase the book through the following link, $1.00 will support EDS Awareness

 

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    Upcoming Events

    • Free Webinar: “Physical Therapy for Ehlers-Danlos Syndrome”

      February 2, 2016
      Live Webinar at 7:30 pm EDT
      Trish Meegan, DPT presents “Physical Therapy for EDS: Including how your posture and thorax/ribcage affects your PT program”

    • Free Webinar – “New Developments in Surgery for EDS Feet & Ankles”

      January 19, 2016
      Live Webinar at 7:30 pm EDT
      Dr. Patrick Agnew presents “New Developments in Surgery for EDS Feet & Ankles”.

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

      Listen to this FREE session anytime!