Ehlers-Danlos Society News

The Ehlers-Danlos Society recently hosted its first-ever Ehlers-Danlos Learning Conference in Australia, a widely successful event that spanned the continent with sessions in both Sydney and Perth.
“Because with EDS, you have a lot of pain, as you can imagine with your body dislocating all the time, it’s kind of painful,” Adare said. “When I paint, it’s the only time I don’t feel pain. So, I paint a lot to kind of offset that.”
A Circle of Hope Each gift strengthens the circle to advance EDS/HSD research, education, advocacy, awareness, and support for those living with EDS and related conditions—worldwide. Research produces new knowledge. This leads to better professional education, earlier diagnosis, and new treatments for those in need. Through awareness, we grow both research funding and patient support. […]
Statement from The Ehlers-Danlos Society, The HMSA, and Ehlers-Danlos Support UK regarding changes in the law in the United Kingdom 14th November 2018 This statement is for people with chronic pain and hypermobility disorders such as hypermobility spectrum disorder and Ehlers-Danlos syndrome. It is for people in the UK, or non-UK patients being treated by doctors in the UK. […]
#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 act of giving. It’s a simple idea. For the Ehlers-Danlos Society, #GivingTuesday is a time to magnify the generosity of each donor. On […]
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 […]
The 19th of September is Aortic Dissection Awareness Day. Patients, families, clinicians, and organizations around the world will gather to share their stories and educate others about this life-threatening condition. Arterial disease, including aneurysm and dissection, is known to occur in some of the more rare types of the Ehlers-Danlos syndromes. This can occur in […]
Join Lara Bloom, International Executive Director of The Ehlers-Danlos Society, on a special screening tour of “Issues With My Tissues” hosted by our US Affiliates from Providence, Rhode Island to Los Angeles, California. All events are free and open to the public. “Issues with my Tissues” follows Lara’s journey as she trains to become the […]
August 14, 2018 Baltimore, MD—The Ehlers-Danlos Society hosted their annual Global Learning Conference in Baltimore last week, bringing together more than 600 patients, families, caregivers, and health professionals for four days of education, advocacy, and support. The conference kicked off on Thursday afternoon with Professor Anne De Paepe of Ghent University delivering the keynote speech […]
June 19, 2018 — The Ehlers-Danlos Society is excited to announce the winners of our awareness month Instagram contest, #FragileButUnbreakable! With over 2000 entries, generating over 30,000 likes, each entry accelerated awareness, spreading stories of strength and hope, passion and progress to friends, family, and fellow EDS/HSD zebras throughout the world. Each of winners sought […]
Posted by Uckfield News on June 12, 2018 Lara Bloom has walked the London Marathon, carried the torch for the London 2012 Paralympic Games, and is constantly on the move around the world raising awareness of rare and invisible diseases. If you met her you would have no idea that she lives in constant pain. […]
June 5, 2018 June is Men’s Health Month—and The Ehlers-Danlos Society is taking the opportunity to spread the word that men get Ehlers-Danlos syndromes and hypermobility spectrum disorders, too. Although EDS and HSD are seen more often in women than in men, the research is clear. Men can and do endure EDS, HSD, and myriad […]
By  Charles Wade-Palmer, originally published in the Daily Star on 3rd June 2018 Natalie Wilson travelled to the most remote corners of the UK to raise awareness of her condition, Ehlers Danlos Syndrome. Natalie, 29, lives in a neck brace after contracting EDS – a disease which weakens the entire body – five years ago. She […]
The Ehlers-Danlos Society is delighted to announce the appointment of Dr. Alan Hakim as its first Director of Education. With this new  role, Dr. Hakim will help the Society build a panel of experts to assess our materials and methods to better address the educational needs of each audience in our community; develop innovative new […]
MAY 16, 2018 While every zebra has a unique set of stripes—and every person living with Ehlers-Danlos has a unique set of symptoms—joint hypermobility, a characteristic most often associated with hypermobile Ehlers-Danlos syndrome (hEDS), the most common type of EDS, is part of almost every diagnosis. Yet, hEDS is only one of the 13 different […]
BALTIMORE—March 1, 2018 The Ehlers-Danlos Society has elected Dr. Woodrow Gandy of Dallas and Philip Hotchkiss of San Francisco to its board of directors. “Dr. Gandy and Mr. Hotchkiss are strong additions to our board, both broadening the expertise of our team through their extraordinary experience in technology, finance, and entrepreneurial endeavors,” states Lara Bloom, […]
Anonymous donor presents $1 million gift to The Ehlers-Danlos Society to jumpstart groundbreaking genomic research into genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS), a rare, degenerative, and all-too-often disabling connective tissue disorder. February 12, 2018 – BALTIMORE, MD – The Ehlers-Danlos Society has announced the largest single donation in its 33-year history to establish an […]
BALTIMORE, MD January 30, 2018 — In honor of The 2018 Ehlers-Danlos Syndromes Global Symposium, John Wiley & Sons, Inc. (NYSE: JW.A and JW.B), has donated free access to its groundbreaking compendium of peer-reviewed research papers, “The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes,” a Special Issue of the American Journal of […]
As part of its ongoing effort to show the true faces of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), The Ehlers-Danlos Society completed a four-day, five-location photo shoot in Maryland and New York, featuring over two dozen people living with EDS and HSD, including sessions with several patients of Dr. Clair Francomano, vice […]
THANK YOU! With the help of our friends, volunteers, donors, and professionals, 2017 was our most productive year ever. We broke new ground through increasingly global collaborative research, education, and awareness, we are making persistent progress towards better diagnosis, treatment, and care. Together, this is what we achieved 2017: MAJOR ADVANCES IN RECOGNITION AND UNDERSTANDING […]
We are seeking people with EDS or HSD to participate in upcoming photo shoots—and help to tell our stories. People of all ages, races, shapes, sizes, and genders with a confirmed EDS or HSD diagnosis are encouraged to submit headshot/profile photo and full-length photos. We also welcome EDS families for group sessions. The Ehlers-Danlos Society […]
October 2017 — The Ehlers-Danlos Society has been approved for a $50,000 funding award by the Patient-Centered Outcomes Research Institute (PCORI) to support a project to develop an Ehlers-Danlos Co-Morbidity Coalition. The Ehlers-Danlos Society will use the funds provided through PCORI’s Pipeline to Proposal Awards program to build a partnership of patients, researchers and other […]
RARE Science, in collaboration with The Ehlers-Danlos Society, will be offering handmade RARE Bears to all children with Ehlers-Danlos syndrome and related conditions throughout the month of May. The volunteer RARE Bear Army creates one-of-a-kind teddy bears for one-of-a-kind children with rare diseases. This is a free program, thanks to the dedication of many volunteers […]
The Ehlers-Danlos Society kicks off Ehlers-Danlos Awareness Month on Monday, May 1. This month-long observance of awareness, education, outreach, and fundraising for the Ehlers-Danlos syndromes and related disorders first began in 2006. “More awareness is needed for these often misdiagnosed and misunderstood conditions,” said Lara Bloom, International Executive Director of The Ehlers-Danlos Society and an […]
Published by EURODIS, 12th April 2017 In the face of current Euroscepticism, the area of rare diseases is one that proves cross-border, European collaboration is essential to improve the lives of EU citizens. European collaboration on rare diseases results in policies that bring high added value to patients and their families, and in turn has […]
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 Registration details, including prices, will be available soon. Hope to see you there!
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 […]
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 […]
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” […]
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 […]
#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 […]
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 […]
(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 […]
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 […]
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 diagnosis […]
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 […]
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 […]
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 […]
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 […]