Category: Society News

Announcing the 2017 Ehlers-Danlos Society Global Learning Conference

Save the date! The Ehlers-Danlos Society would like to invite you to the 2017 Ehlers-Danlos Society Global Learning Conference, September 7th-9th in Las Vegas. CME credits will be available, so bring your favorite medical providers. Registration details, including prices, will be available soon. Hope to see you there!
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‘Most neglected disorder in modern medicine’ receives major classification update

The American Journal of Medical Genetics publishes new research on the Ehlers-Danlos syndromes The Ehlers-Danlos Society, representing a recently formed international consortium of over 90 experts on the Ehlers-Danlos syndromes, will release the culmination of two years of review on Wednesday, March 15th. This publication clarifies the bases for the diagnosis of and updates the […]
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Jessica Adelman Joins The Ehlers-Danlos Society Staff Team

Jessica Adelman joined our team as Program Manager in February 2017. She is involved in communications, development, and administration. She joined our staff after a working with the Society as a grant writer. After receiving her Hypermobile Ehlers-Danlos syndrome diagnosis in 2007, Jessica attended her first Ehlers-Danlos National Foundation conference in 2008 and has been […]
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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” […]
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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 […]
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#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 […]
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#ZebraStrong
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 […]
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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 […]
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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 […]
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