• Join us for FREE Webinars 2x/month! Dr. Pradeep Chopra will present Pain Management Part 2 on April 16. Listen to the Part 1 recording in the "Articles" section.

  • Join us for FREE Webinars 2x/month! Dr. Pradeep Chopra will present Pain Management Part 2 on April 16. Listen to the Part 1 recording in the "Articles" section.

  • What is Ehlers-Danlos Syndrome? Dr. Henderson & Kristin Means describe the basics of EDS in this TV interview.

  • Drs. Goldschneider and Neilson of Cincinnati Children's Hospital discuss Pain Management for Ehlers-Danlos Syndrome

  • Dr. Pradeep Chopra discusses EDS Pain Management - (TCAPP 2013)

  • Dr. Heidi Collins discusses EDS' Affect on Gastrointestinal Function (TCAPP 2013)

  • Dr. Francomano discusses EDS' Affect on Multiple Body Systems (TCAPP 2013)

  • Welcome to EDSawareness.com! We will help you find or start a Local Support Group! We offer FREE programs, webpages and more. Learn about us in this video.

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 study in the UK.)

Most people with EDS - and the people who care for them - don’t know where to turn for information, advice and help with the challenges surrounding EDS.

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 those 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 you are aware of an existing EDS Support Group, ask them to contact us at info@edsawareness.com 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
Evan, 15 year old with EDS, Makes it His Goal to “Live Each day Making a Difference”.

Evan, 15 year old with EDS, Makes it His Goal to “Live Each day Making a Difference”.

Apr 22, 2014

This courageous young man wants to help others with rare and debilitating diseases like he has. By Wesley Gardner Austin Community Newspapers Staff “Sitting on the floor of his living room, with family photographs checkering the light

Next-Generation Sequencing (NGS), Faster and More Economical for EDS & Marfans

Next-Generation Sequencing (NGS), Faster and More Economical for EDS & Marfans

Apr 21, 2014

    Whitney Wooderchak-Donahue, Ph.D. Pinar Bayrak-Toydemir, M.D., Ph.D. Better,  faster and more economical methods to analyze the genetic factors affecting our health. Click Image To Enlarge + Figure 1. TAAs increase the risk of aortic

“For the last 10 years I was told it was all in my Head” – It was EDS!

“For the last 10 years I was told it was all in my Head” – It was EDS!

Apr 20, 2014

Many of those with Ehlers-Danlos are having a difficult time getting diagnosed. RARE DISEASE SUFFERERS say it is like banging their heads “against a brick wall” trying to get specialist treatment in Ireland – and that some doctors have thought

Doctor Speaker Series – May 7, 2014

Doctor Speaker Series – May 7, 2014

Apr 19, 2014

    EDS Awareness invites you to attend a FREE online learning session! On May 7th, Dr. Staci Kallish will speak about EDS with focus on cardiac issues. In this ongoing series, medical topics are presented to patients within the context of

“My baby and I are alive … It’s a miracle”

“My baby and I are alive … It’s a miracle”

Apr 18, 2014

  Many women with Ehlers-Danlos Syndrome have pregnancy and delivery complications. As pregnant Natasha Corrigan lay in a hospital bed, her family were warned that mother and baby may not survive. Natasha, of Witham, has Ehlers Danlos Syndrome

EDS Doctor Speaker Series – Dr. Chopra – Part 2 – RECORDING AVAILABLE

EDS Doctor Speaker Series – Dr. Chopra – Part 2 – RECORDING AVAILABLE

Apr 16, 2014

EDS Awareness invites you to watch this FREE webinar recording! On April 16, Dr. Pradeep Chopra presented a live webinar on EDS pain management. PRESENTER:  Pradeep Chopra, M.D. Director of Interventional Pain Management Center of Rhode Island

EDS Doctor Speaker Series – Dr. Wilson – RECORDING AVAILABLE

EDS Doctor Speaker Series – Dr. Wilson – RECORDING AVAILABLE

Apr 14, 2014

EDS Awareness invites you to watch this FREE webinar recording!   On April 9th, Dr. Golder Wilson spoke about Ehlers-Danlos Spectrum and Dysautonomia. Click  here for combined audio and video recording  Click here for Audio Only Recording link

Judge Reunites Family With Child Affected By Ehlers-Danlos Syndrome

Judge Reunites Family With Child Affected By Ehlers-Danlos Syndrome

Apr 13, 2014

This is another tragic story of couple charged with child abuse due to an Ehlers-Danlos related injury. “It was the type of accident that could happen to any parent – in a split second, a young baby rolls off the bed and falls to the floor.

 

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    Upcoming Events

    • Doctor Speaker Series — May 7, 2014

      Live Webinar at 7:30 pm, EST
      Dr. Staci Kallish
      Genetics & Cardiac issues in EDS

    • May is EDS Awareness Month

      Our team of EDS Support Groups raise awareness across the country during EDS Awareness Month in May!
      READ about past events.
      ADD your awareness activity to the list!

    • The 2014 Annual EDNF Learning Conference will be in Houston, Texas

      July 10-12, 2014
      2014 EDNF Annual Learning Conference