• 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

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Jan Dommerholt about Physical Therapy for Ehlers-Danlos

  • 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. Forest Tennant webinar on “Intractable Pain in Ehlers-Danlos” – April 7, 2015

Dr. Forest Tennant webinar on “Intractable Pain in Ehlers-Danlos” – April 7, 2015

Mar 27, 2015

Join us for a FREE online learning session! On April 7, Dr. Forest Tennant presents “Centralized Intractable Pain in EDS". Since 1975, his passion is to provide guidance and hope to chronic pain

Webinar on “Gastrointestinal Disorders in EDS” by Dr. Manu Sood – April 21, 2015

Webinar on “Gastrointestinal Disorders in EDS” by Dr. Manu Sood – April 21, 2015

Mar 25, 2015

On April 21, Dr. Manu Sood will talk about Gastrointestinal Disorders in EDS. Dr. Sood has spoken at the EDNF Conference and been published on topics such as GI Motility Disorders, IBS and

Fragile teen wishes to study medicine, spread awareness of Ehlers-Danlos Syndrome

Fragile teen wishes to study medicine, spread awareness of Ehlers-Danlos Syndrome

Mar 24, 2015

15-year-old Mya Lilly has multiple dislocations each day caused by Ehlers-Danlos syndrome.  When asked if anything on her wish-list was unrelated to medicine or her health, she found it hard to think of one. She wishes for

Single Mom Dealing with Ehlers-Danlos Syndrome

Single Mom Dealing with Ehlers-Danlos Syndrome

Mar 20, 2015

Ehlers-Danlos Syndrome makes it difficult for Kristina to accomplish daily living tasks.  But, she has been refused disability benefits in Australia on the basis that her condition is ‘curable’. She has trouble driving to her doctor

“The Feldenkrais Method” Webinar by Cynthia Allen – Video Available

“The Feldenkrais Method” Webinar by Cynthia Allen – Video Available

Mar 17, 2015

Watch this FREE online learning session!    Cynthia Allen, GCFP, STMI gave a presentation titled “The Feldenkrais Method and other Somatic Approaches to Improve Function and Ease”. It focuses on movement techniques to increase your body

Free EDS – Chiari Educational Lecture in Cincinnati – April 11

Free EDS – Chiari Educational Lecture in Cincinnati – April 11

Mar 12, 2015

Join us for the Free EDS-Chiari Educational lecture in Cincinnati this April 11 at the Cincinnati Children's Hospital Liberty

How Can Schools Better Understand Ehlers Danlos Syndrome?

How Can Schools Better Understand Ehlers Danlos Syndrome?

Mar 10, 2015

The pressures from the school environment are difficult enough when a student is well.  EDS students have more challenges than the average student,and need the cooperation of the school administration and teachers.   By Jenny – Cheetahs In

Dr. Mark Lavallee webinar “Exercise is Medicine” – Video Recording

Dr. Mark Lavallee webinar “Exercise is Medicine” – Video Recording

Mar 3, 2015

Watch this FREE online learning session! Mark E. Lavallee, M.D presents “Exercise is Medicine – especially for Ehlers-Danlos”. He has EDS, classical type and has lectured at many EDNF

 

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    Upcoming Events

    • Support Conference Call for Spouses & Significant Others

      3-31-2015
      The EDS NE/MA Support Group series of live Support Conference Calls

    • EDS Awareness Educational Series – April 7, 2015

      Live Webinar at 7:30 pm, EST
      Dr. Forest Tennant presents “Centralized Intractable Pain in Ehlers-Danlos”

    • Free EDS Chiari Educational Lecture Cincinnati – April 11, 2015

      Free Conference on April 11
      Free half day EDS Chiari Educational Lecture in Cincinnati, Ohio

    • Dr. Manu Sood presents “Gastrointestinal Disorders in EDS” — April 21, 2015

      Live Webinar at 7:30 pm EDT
      Dr. Manu Sood presents “Gastrointestinal Disorders in EDS”