• WELCOME! ** Learn about our FREE programs in this fun video! ** It's about empowerment, education, team-building, local support groups... and EDS awareness!

  • 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. Derek Neilson about “EDS Hypermobility Type and what is needed to change the perception of this condition”

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Pradeep Chopra: EDS Pain Management (Part 2)

  • 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 via the "Life as a Zebra" organization. This is the story of Katie Dama Jaskolski:

  • Our FREE programs are made possible by BodySupportStore.com Offering over 250 products recommended for EDSers, by EDSers. Please check out these helpful products at lowest-allowable prices.

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

Proper Diagnosis Helps Family Deal with Ehlers Danlos Syndrome

Oct 2, 2014

Diagnosis is the first step in treatment of Ehlers Danlos Syndrome.  Yet, 95% of sufferers remain undiagnosed*. 50 percent of patients waited more than 20 years to receive a proper diagnosis, according to the EDSawareness.com poll. “Charlie

EDS Awareness Educational Series – TODAY

EDS Awareness Educational Series – TODAY

Oct 1, 2014

    Join us for a FREE online learning session!  On October 1, Kathleen Kane, ESQ speaks about the Social Security Disability application process, and factors that EDSers should consider when filing for disability.   Sponsored

Ontario Family Fights for Province to Pay for Ehlers Danlos Surgery

Ontario Family Fights for Province to Pay for Ehlers Danlos Surgery

Sep 29, 2014

Erika received major funding for her needed surgery. It came from the generosity of her community. Should this money have come from Ontario’s public health insurance?  By Susan Gamble.   Two years ago, the community did what the

EDS Awareness Educational Series – October 15, 2014

EDS Awareness Educational Series – October 15, 2014

Sep 27, 2014

  Join us for a FREE online learning session!  On October 15, Dr. Shweta Dhar, Medical Director of Adult Genetics at Baylor College of Medicine, speaks about “Coordination of Care in Adults with EDS”   Sponsored

CSU Spoonies Help Students with Ehlers Danlos Syndrome

CSU Spoonies Help Students with Ehlers Danlos Syndrome

Sep 25, 2014

Students with chronic health conditions can get support from the Colorado State University “Spoonies” and the CSU Chronic Health Mentoring Program. We applaud these programs and hope they can serve as a model for other

Mother-Daughter Duo Use Ehlers Danlos Syndrome to Give Back

Mother-Daughter Duo Use Ehlers Danlos Syndrome to Give Back

Sep 23, 2014

By Alia Blackburn. Five-year-old Amelia and her mother are raising EDS Awareness in hospitals.  They give packages containing personal-care items to help hospital patients, and use the opportunity to share about Ehlers-Danlos Syndrome.  

Jessica Participates in the first “Conquer Chiari Walk Across America”

Jessica Participates in the first “Conquer Chiari Walk Across America”

Sep 19, 2014

Jessica Paddack has endured many surgeries throughout her 15 year battle with Chiari malformation. One of her Chiari surgeries led to the discovery of her Ehlers-Danlos Syndrome. The “Conquer Chiari Walk Across America” is this

EDS Awareness Educational Series – Recording Available

EDS Awareness Educational Series – Recording Available

Sep 17, 2014

Listen to this FREE online learning session about EDS & Psychiatric illness misdiagnoses by Dr. Richard Barnum, Psychiatrist. How can families handle situations where they feel misunderstood by their healthcare providers? Unfortunately, many

 

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    Upcoming Events

    • EDS Awareness Educational Series – October 1, 2014

      7:30pm, Eastern Time
      Kathleen Kane, ESQ
      “Applying for Disability”

    • EDS & POTs EDNF Webinar – October 9, 2014

      October 9, 2014
      EDS & POTs Webinar by EDNF
      Dr. Peter Rowe and Dr. Satish R. Raj,

    • EDS Awareness Educational Series – October 15, 2014

      Live Webinar at 7:30 pm, EDT
      Dr. Shweta Dhar presents:
      “Coordination of Care in Adults with EDS”

    • Abilities Expo is a CELEBRATION of what you CAN DO

      November 21 – 23, 2014 in the Bay Area
      Abilities Expo is a CELEBRATION of what you CAN DO