Category: Society News

Clara Lemarr finalist in the WEGO Health Advocacy awards

We are delighted that Clara Lemarr, who spoke to our kids and teen Zebras at our 2016 conference, is a finalist in the WEGO Health Advocacy awards! We are very excited for her and thrilled with the honor she has received. Great awareness for Ehlers-Danlos Syndrome. She is a finalist for “Rookie of the Year” […] View page

The Ehlers-Danlos Society Partners with The Mighty

The Ehlers Danlos Society is thrilled to announce a new partnership that will bring our knowledge and resources in front of The Mighty‘s wide-reaching, global readership. With a growing home page on The Mighty, The Ehlers-Danlos Society will now appear on many stories on the site, allowing us to get many more people involved with […] View page

#ZebraStrong! The Ehlers-Danlos Society to Hold Rally in Baltimore’s Inner Harbor

#ZebraStrong! The Ehlers-Danlos Society to Hold Rally in Baltimore’s Inner Harbor to Promote Awareness of Genetic Disorder Ehlers-Danlos Syndrome (EDS) The Ehlers-Danlos Society will host #ZebraStrong, a rally in Baltimore’s Inner Harbor to build awareness for Ehlers-Danlos syndrome, an often painful and disabling, yet highly underdiagnosed and misdiagnosed genetic disorder, at 4:30pm on Saturday, July […] View page

Ehlers-Danlos Society Global Learning Conference 2016

Time is Running Out! Register Now! Join us for The Ehlers-Danlos Society Global Learning Conference 2016 at the Baltimore Hilton on July 14-16, 2016. Click here for full details about this conference THIS IS OUR TIME TO: Learn about the latest developments in research and care from the world’s top Ehlers-Danlos researchers and medical professionals […] View page

I’d rather NOT be here today

(Ehlers-Danlos Syndrome) Dear Dr’s, Physio’s, OT’s and GP’s, Look and learn and understand please. Don’t judge me or turn your face away I don’t wish to be a patient in the N.H.S today. I’d rather be out, Fulfilling my life. Than sitting in waiting rooms, Just ‘cause of the roll of a dice. Which has […] View page

EDNF Becomes the Ehlers-Danlos Society

Strength begins with hope: Ehlers-Danlos National Foundation Forms The Ehlers-Danlos Society As Next Step In The Global Fight Against Under-Diagnosed Genetic Disorder McLean, VA — In an intensifying battle to better understand one of medicine’s most vexing, misunderstood, and potentially dangerous and debilitating genetic disorders, The Ehlers-Danlos National Foundation (EDNF) announced today its evolution into […] View page

It’s Our Time: STINA Records Message of Hope for Ehlers-Danlos Awareness

Patients born with Ehlers-Danlos syndrome often fight many for years for proper diagnosis, recognition, and treatment. Most patients wait more than a decade to obtain diagnosis. Their fight can be a difficult, tortuous road. Because of the multisystemic nature of many forms of Ehlers-Danlos, too many patients struggle for over a decade to obtain comprehensive […] View page

2016 International Symposium – May 3–6, 2016

The Ehlers-Danlos Society is proud to announce an international symposium on Ehlers-Danlos syndrome in New York City, May 3–6, 2016, generously funded by EDS UK and the Ehlers-Danlos National Foundation. The symposium is being held in alliance with the EDS consortium in Ghent and medical professionals internationally. The primary goal is to reclassify the diagnostic […] View page

Ehlers-Danlos Syndrome: No longer invisible

For too many years, people affected by Ehlers-Danlos Syndrome have suffered quietly, fighting through each day with little hope, and even less visibility to the medical world. As of May 2016, Ehlers-Danlos Syndrome will no longer be invisible to the world. Together, the people of the Ehlers-Danlos Society will join with an internationally renowned group […] View page