• 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. Henry Burkholder about POTs and EDS

  • 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
Dr. Jan Dommerholt Webinar on “Physical Therapy for Ehlers-Danlos” – Video Recording

Dr. Jan Dommerholt Webinar on “Physical Therapy for Ehlers-Danlos” – Video Recording

Jan 23, 2015

Join us for a FREE online learning session! On January 20th, Jan Dommerholt, DPT presents “Physical Therapy for EDS”. He has lectured at EDNF patient and physician conferences.

Gabrielle’s Personal Battle with Ehlers-Danlos Syndrome

Gabrielle’s Personal Battle with Ehlers-Danlos Syndrome

Jan 20, 2015

After being diagnosed with Ehlers-Danlos Syndrome, high-school student Gabrielle found comfort with members of the Young Life organization. She found purpose and motivation through her renewed spiritual connection. “Right after I got

10 year old Toby with Ehlers-Danlos Syndrome Regains Independence

10 year old Toby with Ehlers-Danlos Syndrome Regains Independence

Jan 17, 2015

The local community responds to a hospital fundraiser for Toby and buys him a new wheelchair – just in time for Christmas! A ten-year-old who struggles every day with pain and exhaustion due to a debilitating condition can ‘take his

Ehlers-Danlos Service Dog is Nominated for Kennel Club Award

Ehlers-Danlos Service Dog is Nominated for Kennel Club Award

Jan 15, 2015

EDSer Shelley and her service dog, Kibble, have been nominated for the Kennel Club’s Eukanuba “Friends For Life” competition. He has helped her regain much independence! The dog is trained to assist Shelley in all aspects of her

Father-Daughter Dance for Ehlers Danlos Syndrome

Father-Daughter Dance for Ehlers Danlos Syndrome

Jan 13, 2015

  Five-year-old Amelia Gibson and her father will be holding a “Father & Daughter Dance” on January 17th to raise awareness and funds for Ehlers Danlos Syndrome. Amelia and her mother are raising EDS Awareness in Indiana

Woman with Ehlers-Danlos Syndrome (EDS) Has Painful Dislocations 10 Times a Day

Woman with Ehlers-Danlos Syndrome (EDS) Has Painful Dislocations 10 Times a Day

Jan 10, 2015

When Jojo was diagnosed with EDS, she felt relieved! "Finally, I had an answer to why my body is the way it is.” Her EDS went undiagnosed for 24 years! This is not surprising, as our poll indicates more than 50% of EDS patients wait more than 20

5th Grader with Ehlers-Danlos Joins OSU Women’s Hockey Team: Watch VIDEO

5th Grader with Ehlers-Danlos Joins OSU Women’s Hockey Team: Watch VIDEO

Jan 7, 2015

Watch this fun video of 10-year-old Erin joining the Ohio State Hockey Team through a program called Team IMPACT. Since Ehlers-Danlos makes Erin more susceptible to injury, it’s unlikely she’ll be able to participate in sports with her peers.

“POTs and EDS” Webinar by Dr. Henry Burkholder – Recording Available

“POTs and EDS” Webinar by Dr. Henry Burkholder – Recording Available

Jan 6, 2015

  EDS Awareness invites you to watch this FREE webinar recording!    Sponsored by: www.bodysupportstore.com     Dr. Henry Burkholder  presents “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”. He is a

 

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    Upcoming Events

    • EDS Awareness Educational Series – February 17, 2015

      Live Webinar at 7:30 pm, EST
      Dr. Howard Epps presents “Orthopaedic Considerations in EDS”