Published: 02/10/2018 Tags: The Ehlers-Danlos Society News

International Symposium Convenes to Address Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders

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.

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 brightest minds in Ehlers-Danlos (EDS) research and clinical management to tackle some of the most pressing questions involving EDS, hypermobility spectrum disorders (HSD) — and myriad of associated symptoms and related conditions.

“We welcome old colleagues and consortium members to beautiful Ghent, a hidden vibrant city full of charm — and we are equally delighted to see all the fresh new faces here dedicated to helping people living with EDS and HSD,” stated Professor Fransiska Malfait, co-chair of the symposium and co-chair of The Ehlers-Danlos Society’s medical board during her opening address. “This will be a truly interdisciplinary meeting.”

International collaboration and interdisciplinary research builds hopes for advancement

“This symposium represents the collective efforts of hundreds of researchers, clinicians and patient experts throughout the world to address these complex, multi-systemic, poorly understood group of disorders,” states Lara Bloom, international executive director of The Ehlers-Danlos Society.

This year’s symposium brings together an international panel of leading clinicians, clinical and basic scientists — and patient support group representatives — to foster multidisciplinary collaboration on the rapidly expanding array of research into the Ehlers-Danlos syndromes and associated pathologies.”We are energetically seeking to accelerate recent clinical advances and delve deeper into the molecular and pathogenic mechanisms underlying EDS and related syndromes,” adds Clair Francomano, chair of The Ehlers-Danlos Society’s medical board and director of The Ehlers-Danlos Society Center for Clinical Care and Research at the Harvey Institute of Human Genetics, Greater Baltimore Medical Center.

Presentations will include the molecular etiology of these disorders, the biochemical abnormalities produced by the underlying mutations affecting genes involved in connective tissue homeostasis, the clinical consequences of these mutations and the latest advances in therapies, including medical, surgical and physiotherapeutic treatments, and the effects of these interventions on the natural history of the disease.

Ultimately, the symposium will provide the forum necessary for these experts to discuss the potential implications of current research and clinical findings, and plan the research necessary to improve the lives of those with EDS and HSD.

The momentum builds as growing international collaboration accelerates understanding 

“Our momentum is building,” states Bloom. “Our 2016 symposium in New York saw both the formalisation of the International Consortium on Ehlers-Danlos and Related Disorders and the launch of The Ehlers-Danlos Society into a global catalyst for research, awareness, education and support.”

“Collaboration of this scale is so powerful and we are fortunate to have the opportunity to work alongside our international colleagues as we push forth to learn more about these multisystemic, complex genetic disorders,” added Dr. Alan Hakim, education director for the Ehlers-Danlos Society. “The previous symposium was a huge success in advancing our understanding of the Ehlers-Danlos syndromes and I have no doubt that we will see similar, groundbreaking progress from this event.”

The previous symposium served as a catalyst for the publication of a groundbreaking comprehensive special edition of the American Journal of Medical Genetics. Comprised of 18 original papers, the supplement, Volume 175, Issue 1, Part C: The Ehlers‐Danlos Syndromes: Reports from the International Consortium on the Ehlers‐Danlos Syndromes, includes the first new update to the classification of the Ehlers-Danlos syndromes in more than two decades, increased the number of named EDS types from six to 13, introduced the newly described hypermobility spectrum disorders and established management and care guidelines for all types of EDS, as well as many of the comorbid conditions sometimes seen in conjunction with EDS.

Ghent 2018 — energy into action

The 2018 International Symposium on the Ehlers-Danlos Syndromes lasted four days, 26 – 29 September, and included current research and poster presentations from experts in the field. At the conclusion of the symposium, a Patient Day will be held on Sunday, 30 September, to allow patients to learn about managing their condition from these world-renowned EDS experts.

“We are extremely proud to host the International Consortium for the second time, this time with the expert team at the University of Ghent, and reassert our commitment to research into the Ehlers-Danlos syndromes,” states Lara Bloom, international executive director for the Ehlers-Danlos Society. “These researchers, clinicians and scientists hold the key to saving and improving the lives of all those living with EDS, HSD and the associated symptoms and conditions affecting so many throughout the world. It is an honor to support this event.”

Virtual Support Groups

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Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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