• 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. Derek Neilson about "EDS Hypermobility Type & what is needed to change the perception of this condition"

  • Join us for FREE Webinars 2x/month! Watch this presentation by Dr. Peter Rowe: Managing Orthostatic Intolerance in EDS

  • 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.

WELCOME to the EDS Awareness website!
Watch this video to learn about our FREE educational sessions & support groups!


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.

Loading map...

Loading

Recent Articles
“EDS Educational Series” Webinar – Recording Available

“EDS Educational Series” Webinar – Recording Available

Aug 20, 2014

EDS Awareness invites you to listen to a FREE online learning session! On August 20, 2014 Dr. Alan Pocinki  gave a presentation about  Chronic Pain, Poor Sleep, Depression, and Fatigue in EDS.  Dysautonomia was also addressed in this context.

How to Help Your Ehlers-Danlos Caregiver

How to Help Your Ehlers-Danlos Caregiver

Aug 16, 2014

Caregivers are the unsung heroes in the life of the chronically ill.  They offer critical support for patients living with Ehlers Danlos Syndrome.  Learn 7 practical ways you can appreciate your caregiver and help them manage their

EDS Awareness Educational Series – September 3, 2014

EDS Awareness Educational Series – September 3, 2014

Aug 12, 2014

  EDS Awareness invites you to attend a FREE online learning session! On September 3, Dr. Anne Maitland speaks about Mast Cell Activation Syndrome in EDS Patients.   Sponsored by www.bodysupportstore.com    WHAT:  “ EDS

11-year-old with Ehlers Danlos Syndrome Needs Accessible Van & Bath

11-year-old with Ehlers Danlos Syndrome Needs Accessible Van & Bath

Aug 8, 2014

This Ontario community has rallied to help support and raise funds for the Hennessy family. Zoe, 11, has EDS and needs an accessible van to help her travel to appointments with less hazard for herself and her family.  They are closing in

“EDS Awareness Educational Series” Webinar – Recording Available

“EDS Awareness Educational Series” Webinar – Recording Available

Aug 6, 2014

  EDS Awareness invites you to listen to a FREE online learning session! On August 6, Dr. Derek Neilson’s presented EDS Hypermobility Type and what is needed to change the perception of this condition.       Sponsored

Carrie is Honored for Ehlers-Danlos Caregiving

Carrie is Honored for Ehlers-Danlos Caregiving

Aug 5, 2014

EDS caregiver, Carrie Brazier, has been nominated for an award recognizing positive role models - the “Young People of the Year” (YOPEY) award.  “She is very selfless and puts everybody else first. If she was not here I could not

Haley Rises Above Ehlers-Danlos Syndrome, Meets Tim Tebow

Haley Rises Above Ehlers-Danlos Syndrome, Meets Tim Tebow

Aug 3, 2014

Haley’s wish will come true as she spends personal one-on-one time with her role model, Tim Tebow! Tim Tebow Foundation’s “Wish 15” program (W15H) reaches out to kids with life-threatening illnesses whose wish is to meet Tim Tebow. 

Maddy Parker is Ehlers Danlos Ambassador and “Child of Courage”

Maddy Parker is Ehlers Danlos Ambassador and “Child of Courage”

Aug 1, 2014

We have been tracking 11-year-old Maddy’s exceptional work as she raises Ehlers Danlos awareness in Australia.  By ELISSA DOHERTY. Maddy Parker runs a campaign to raise awareness for the Ehlers Danlos syndrome that both she and her sister

 

Get Our FREE Report:



Current Poll

    • How long until you received a proper diagnosis for EDS?

      View Results

      Loading ... Loading ...
  • .

    eds-survey

     


    Upcoming Events

    • EDS Awareness Educational Series — September 3, 2014

      Live Webinar at 7:30 pm, EDT
      Dr. Anne Maitland
      Director, Mast Cell Activation Center of NY
      “Mast Cell Activation Syndrome in EDS”

    • 5th Annual New England Marfan Syndrome and Connective Tissue Disorders Symposium

      September 13, 2014 at 8 AM – 4 PM
      Best Western Executive Court Inn/Conf. Ctr.
      Drs. Hal Dietz and Brad Tinkle will speak