• 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. Peter Byers about Vascular Ehlers Danlos

  • Ehlers-Danlos National Foundation and Dysautonomia International held a joint live webinar

  • 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
“POTs and EDS” Webinar by Dr. Henry Burkholder on January 6, 2015

“POTs and EDS” Webinar by Dr. Henry Burkholder on January 6, 2015

Dec 19, 2014

Join us for a FREE online learning session!    On January 6th, Dr. Henry Burkholder  presents “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”. He is a Pediatric Cardiologist and presenter at the 2014 EDNF Conference in

Dr. Peter Byers Webinar on Vascular Ehlers-Danlos Syndrome – Video Recording

Dr. Peter Byers Webinar on Vascular Ehlers-Danlos Syndrome – Video Recording

Dec 17, 2014

EDS Awareness invites you to watch this FREE webinar recording! Sponsored by www.bodysupportstore.com   TOPIC:    “Vascular Ehlers-Danlos Syndrome / EDS type IV”  PRESENTER:   Dr. Peter Byers About our speaker:  Dr. Byers

8 Year Old Forest Ranger with Ehlers Danlos Syndrome

8 Year Old Forest Ranger with Ehlers Danlos Syndrome

Dec 15, 2014

Watch this video about a boy with Ehlers Danlos Syndrome whose dream came true! “Eight-year-old Gabriel was officially named an honorary ranger at Yosemite National Park. Gabriel Lavan-Ying, from Gainesville, Florida, has Ehlers-Danlos

Take Survey on Gastrointestinal Issues with EDS or CTDs—Expires on 12/31/2014

Take Survey on Gastrointestinal Issues with EDS or CTDs—Expires on 12/31/2014

Dec 14, 2014

Your input is needed for this very important EDS survey! Follow the link at the bottom of this article to take the survey. This survey on gastrointestinal issues is being conducted by a group of doctors at Beth Israel Deaconess Medical Center

Nicola Gets Help From Fiance for Her Hypermobility Syndrome

Nicola Gets Help From Fiance for Her Hypermobility Syndrome

Dec 13, 2014

Nicola’s story brings awareness to how difficult life can be with hypermobile joints.  She is fortunate to have a the help of a supportive fiance and a mother who is a retired nurse. By PETER HENN. Nicola Lynch, of Rainham, Kent, has

EDS Awareness Educational Series presents “Sinus Care for Ehlers-Danlos”

EDS Awareness Educational Series presents “Sinus Care for Ehlers-Danlos”

Dec 8, 2014

EDS Awareness invites you to watch this FREE webinar recording! Dr. Subinoy Das presents: “Sinus Care for Ehlers-Danlos Syndrome” Dr. Das is an Otolaryngologist (ENT specialist) and CEO of the U.S. Institute for Advanced Sinus Care and

UK Woman Spreads Awareness of Ehlers-Danlos Syndrome

UK Woman Spreads Awareness of Ehlers-Danlos Syndrome

Dec 6, 2014

Ruth Baker is telling her story to increase EDS Awareness in the UK.  She shares our passion – helping even one person makes it all worthwhile. Ruth says, “It can be a lonely place when you’re suffering from something that is

Caring Doctor Helps Patients with Postural Orthostatic Tachycardia Syndrome (POTs)

Caring Doctor Helps Patients with Postural Orthostatic Tachycardia Syndrome (POTs)

Dec 4, 2014

More than 70 million people worldwide live with various forms of dysautonomia, including Postural Orthostatic Tachycardia Syndrome. POTS is common in the Ehlers Danlos population. By Hunterdon County Democrat. “Most people know that October

 

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    Upcoming Events

    • EDS Awareness Educational Series – January 6, 2015

      Live Webinar 7:30 pm EST
      Dr. Henry Burkholder speaks about “Postural Orthostatic Tachycardia Syndrome” (POTS) and EDS”