• Join us for FREE Webinars 2x/month! Dr. Pradeep Chopra will present Pain Management Part 2 on April 16. Listen to the Part 1 recording in the "Articles" section.

  • Join us for FREE Webinars 2x/month! Dr. Pradeep Chopra will present Pain Management Part 2 on April 16. Listen to the Part 1 recording in the "Articles" section.

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

  • Drs. Goldschneider and Neilson of Cincinnati Children's Hospital discuss Pain Management for Ehlers-Danlos Syndrome

  • Dr. Pradeep Chopra discusses EDS Pain Management - (TCAPP 2013)

  • Dr. Heidi Collins discusses EDS' Affect on Gastrointestinal Function (TCAPP 2013)

  • Dr. Francomano discusses EDS' Affect on Multiple Body Systems (TCAPP 2013)

  • Welcome to EDSawareness.com! We will help you find or start a Local Support Group! We offer FREE programs, webpages and more. Learn about us in this video.

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 study in the UK.)

Most people with EDS - and the people who care for them - don’t know where to turn for information, advice and help with the challenges surrounding EDS.

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 those 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 you are aware of an existing EDS Support Group, ask them to contact us at info@edsawareness.com 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 Doctor Speaker Series – April 16, 2014 – TOMORROW

EDS Doctor Speaker Series – April 16, 2014 – TOMORROW

Apr 15, 2014

EDS Awareness invites you to attend a FREE online learning session! On April 16, Dr. Pradeep Chopra presents a live webinar on EDS pain management. In this ongoing series, medical topics are presented to patients within the context of Ehlers-Danlos

EDS Doctor Speaker Series – Dr. Wilson – RECORDING AVAILABLE

EDS Doctor Speaker Series – Dr. Wilson – RECORDING AVAILABLE

Apr 14, 2014

EDS Awareness invites you to attend a FREE online learning session!   On April 9th at 7:30pm EST, Dr. Golder Wilson, Pediatric Geneticist, spoke about Ehlers-Danlos Spectrum and Dysautonomia. In this ongoing series, medical topics are presented

Judge Reunites Family With Child Affected By Ehlers-Danlos Syndrome

Judge Reunites Family With Child Affected By Ehlers-Danlos Syndrome

Apr 13, 2014

This is another tragic story of couple charged with child abuse due to an Ehlers-Danlos related injury. “It was the type of accident that could happen to any parent – in a split second, a young baby rolls off the bed and falls to the floor.

Teen with Ehlers-Danlos Publishes Book Alongside Loyal Friend

Teen with Ehlers-Danlos Publishes Book Alongside Loyal Friend

Apr 11, 2014

Kylie and Elizabeth’s novel – 5 years in the making – is now published!  It is an imaginary tale written by a pair whose friendship is proven and real. “It takes a very special person to stick with someone who has gone

“Military Child of the Year” Has Ehlers-Danlos Syndrome

“Military Child of the Year” Has Ehlers-Danlos Syndrome

Apr 8, 2014

Michael-Logan Jordan is an ambassador for the Arthritis Foundation and president of his own foundation! Reported by Khon2 News. “A Kailua teen will be recognized with a Military Child of the Year Award from Operation Homefront during a

British University Designs Physical Therapy Program for Hypermobility Syndrome

British University Designs Physical Therapy Program for Hypermobility Syndrome

Apr 6, 2014

UWE Bristol is developing a promising PT program to help patients with Hypermobility Syndrome (JHS). “Physiotherapy researchers at UWE Bristol have come up with a package of treatment and information to help people affected by Joint

Sled Hockey Team Includes Players with Ehlers-Danlos

Sled Hockey Team Includes Players with Ehlers-Danlos

Apr 5, 2014

Pennsylvania athletes with Ehlers-Danlos are hooked on Sled Hockey. The team will travel to Boston to participate in the Disabled Hockey Festival. Teammates enjoy being able to play a sport without having to think about their disability. By Eric

Tri-Athlete Continues to Compete Despite Hypermobility

Tri-Athlete Continues to Compete Despite Hypermobility

Apr 4, 2014

This determined British man competes in triathlons despite his disorder. Geoff spreads awareness for the UK Hypermobility Syndrome Association.  “GEOFF Render has defied doctors after making a remarkable recovery from an accident during a

 

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    Upcoming Events

    • Doctor Speaker Series – April 16, 2014

      FREE Live Webinar at 7:30pm, EST
      Dr. Pradeep Chopra presents “EDS Pain Management”

    • May is EDS Awareness Month

      Our team of EDS Support Groups raise awareness across the country during EDS Awareness Month in May!
      READ about past events.
      ADD your awareness activity to the list!

    • The 2014 Annual EDNF Learning Conference will be in Houston, Texas

      July 10-12, 2014
      2014 EDNF Annual Learning Conference