Category: Society News


#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

The Ehlers-Danlos Society Announces New Leadership

EDNF Installs 2014-2015 Board of Directors  (McLean, VA, July 30, 2014) – The Ehlers-Danlos National Foundation (EDNF) is pleased to announce its 2014-2015 Board of Directors. Sandra Aiken Chack will serve as chair. The board was voted upon earlier this month at the EDNF 2014 Annual Learning Conference in Houston, TX July 10-12. “The Ehlers-Danlos […] View page