Ehlers-Danlos Society News

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, […]