Ehlers-Danlos Society News

#GivingTuesday is a global day dedicated to giving back. On Tuesday, November 27, 2018, individuals, nonprofit organizations, and businesses around the world will come together for one common purpose: to celebrate the simple act of giving. It’s a simple idea. For The Ehlers-Danlos Society, #GivingTuesday is a time to magnify the generosity each donor through […]
The Cherry Hill Education Association recently held their 14th annual, “Volley for Support” fundraising event, raising over $10,000 for the Ehlers-Danlos Society while spreading awareness for the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Over 500 people attended the volleyball tournament at Cherry Hill East High School in Cherry Hill, NJ. Teachers from each […]
by Ngaevarue Katjangua, originally posted 31 Oct 2018 by The Namibian WHILE some people battle with one disease at a time, a person who suffers from the rare Ehlers-Danlos Syndromes has to endure several conditions at the same time. The conditions range from dislocating joints, bruising skin, poor eyesight, fatigue, frequent collapsing and insomnia as […]
Tell us how we are doing! The Ehlers-Danlos Society has prepared a feedback survey for our community. The results of this survey will help us determine the direction of future programming and what we can do to serve you better. We appreciate your time and look forward to hearing from you. Please click here to complete […]
by Laura Tuthall Life as a hypermobile person can be painful, exhausting, and unpredictable. Many aspects of our health are out of our control, but we do make choices that cumulatively affect our functioning. Most of us know this at some level; from one careless motion to years of repetitive activity, actions big and small […]
Baltimore, MD — Saturday, October 20th marks the first ever International Mastocytosis and Mast Cell Diseases Awareness Day. Established by a collaborative partnership of 24 mast cell disease advocacy groups, Mast Cell Awareness Day seeks to empower patients and advocates to educate their communities about this little-known, potentially disabling group of disorders that can affect […]
Advice for navigating—and maybe even changing—institutional bias on your journey through high school and beyond. By Alaina Leary. Originally published in VICE magazine’s Power and Privilege Issue on Oct. 15, 2018. I faced a maze of questions as a high schooler applying to colleges in 2010. What universities were LGBTQ+ friendly, which one had the biggest […]
GHENT — October 17, 2018 — The Ehlers-Danlos Society hosted the 2018 International Symposium on the Ehlers-Danlos Syndromes in Ghent, Belgium, on 26-29 September, bringing together more than 250 of the world’s leading scientific and clinical experts in EDS from 23 countries. The four-day meeting was packed with talks from 17 senior invited speakers, 51 […]
Patients, caregivers, medical professionals, and patient organizations will collaborate throughout the month of October to educate their communities about dysautonomia, a complex, misunderstood group of conditions caused by abnormalities in the autonomic nervous system. According to Dysautonomia International, “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of […]
With generous support for research funding, The Ehlers-Danlos Society sponsors International Symposium in Ghent, Belgium, to accelerate collaborative global research into EDS, HSD, their related symptoms and associated conditions. GHENT, Belgium, September 28, 2018 – With over 275 scientists, clinicians and patient organizations from around the world, The 2018 International Symposium on the Ehlers-Danlos Syndromes is bringing together the […]