APRIL 4, 2018, BALTIMORE, MD USA — As part of its ongoing efforts to improve diagnostic and treatment outcomes for people living with the Ehlers-Danlos syndromes throughout the world, The International Consortium on the Ehlers-Danlos Syndromes and Related Disorders has significantly expanded the scope of its collaborative research endeavors by:
- Establishing new working groups for Pediatrics, Skin, and Pelvic Disorders;
- Reorganizing Pain Management and Psychiatric and Psychological Aspects into two separate working groups;
- Expanding the Hypermobile EDS Committee to encompass the newly defined hypermobility spectrum disorders (HSD), as the Hypermobile EDS and Hypermobility Spectrum Disorders Committee
- Adding new professionals and patient experts across the consortium.
“This is an exciting time for The International Consortium. The addition of these outstanding medical professionals, patient experts, and working groups will help the Consortium explore new lines of inquiry in the fight for earlier diagnosis and more effective treatment options for those living with EDS and HSD through the world,” states Lara Bloom, International Executive Director of The Ehlers-Danlos Society.
ABOUT INTERNATIONAL CONSORTIUM ON THE EHLERS-DANLOS SYNDROMES & RELATED DISORDERS
The International Consortium is an independent group of medical professionals and experts committed to improving the lives of those living with the Ehlers-Danlos syndromes and related disorders through collaborative research.
The Consortium’s clinicians, scientists, and patient experts are organized into committees based on medical specialty and research interests and coordinated by the Steering Committee.
In addition to introducing the newly described hypermobility spectrum disorders (HSD), The International Consortium 2017 Ehlers-Danlos Classification, represents the first comprehensive work in more than twenty years to clarify descriptions of the thirteen subtypes of Ehlers-Danlos syndromes; update criteria for diagnosis; and to standardize their management and care guidelines for those living with EDS or HSD.
Leading to the September 2018 International Symposium in Ghent, the Consortium’s work will be focused on developing a set of Common Data Elements (CDEs) to use as the basis for future collaborative research on the Ehlers-Danlos syndromes and related disorders.