• 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. Forest Tennant about Managing Centralized Intractable Pain in Ehlers-Danlos

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Derek Neilson about EDS Hypermobility and What is Needed to Change the Perception of this Condition

  • 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
EDS Awareness Shirts – Now Available

EDS Awareness Shirts – Now Available

Apr 18, 2015

Now available at www.bodysupportstore.com Zebra Shirts for awareness – only $10 each! This is a perfect way to communicate our EDS Awareness message during our awareness activities, such as our walks in May and June.

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

Apr 17, 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

Free EDS – Chiari Educational Lecture in Cincinnati – Recording Available

Free EDS – Chiari Educational Lecture in Cincinnati – Recording Available

Apr 15, 2015

Recording and slides are available for the Free EDS - Chiari Physician Conference held in Cincinnati, Ohio

People With Invisible Disabilities, including Ehlers-Danlos, Need More Understanding

People With Invisible Disabilities, including Ehlers-Danlos, Need More Understanding

Apr 12, 2015

NPR radio ran a segment on invisible disabilities to commemorate the 25th anniversary of the Americans with Disabilities Act (ADA).  While progress has been made, much still needs to be done.  Click here for the original broadcast on NPR

Dr. Forest Tennant webinar on “Centralized Intractable Pain in Ehlers-Danlos” – Recording Available

Dr. Forest Tennant webinar on “Centralized Intractable Pain in Ehlers-Danlos” – Recording Available

Apr 7, 2015

Watch this FREE online learning session! Dr. Forest Tennant presents “Centralized Pain in EDS". Since 1975, his passion is to provide guidance and hope to chronic pain

Mom with Ehlers-Danlos Syndrome Gets a Grant to Pay for a Scooter

Mom with Ehlers-Danlos Syndrome Gets a Grant to Pay for a Scooter

Apr 6, 2015

This UK mom is now more mobile!  After receiving a grant for a scooter, she can now spend more quality time with her kids. By Tom Murphy of the Westmorland Gazette. AN EDEN mum-of-two who suffers from a life-changing syndrome is looking forward to

How Can Schools Better Understand Ehlers Danlos Syndrome?

How Can Schools Better Understand Ehlers Danlos Syndrome?

Mar 30, 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

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

 

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    Upcoming Events

    • 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”