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GERSED Belgium as bl (non-profit association = association under the 1901 law in France) is the Study and Research Group forEhlers-DanlosSyndrome (Belgium) and was created in October 2017 by health professionals (specialist and general practitioners and paramedics), involved in Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (HSD).
It is recognised as a NETWORK of EXPERTS in Ehlers-Danlos syndrome on the rare disease portal ORPHANET (INSERM - National Institute of Health and Medical Research).
The purpose of this association is:
exchange of knowledge and experience on the diagnosis and treatment of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD)
- bibliographic information
- organization of epidemiological surveys
- enrichment of semiological knowledge of EDS
- therapeutic prospects and evaluation of treatmentstherapeutic prospectives and evaluation of treatments
-organization of trainings for health professionals and social actors
-organization of clinical and therapeutic education sessions for patients and their families
-production of scientific works and books on EDS
-recognition of the social and therapeutic rights of EDS patients
Dr Stéphane DAENS, MD, Internal Medicine and Rheumatology, Member of GERSED France, coordinator of an Orphanet Expert Network (GERSED Belgium).
Prof Stephen W. PORGES, PhD, Behavioral Neuroscience, North Carolina, USA
Prof Anne Maitland, MD, PhD, Immunology, Allergology, Mast cell disorders, New York, USA
Prof Andràs PALDI, Msc, PhD, Geneticist and Epigeneticist, Paris, France
Dr Isabelle BROCKMD, Clinical Research, New York, USA
Dr Katja KOVACICMD, Pediatric Gastroenterology, Wisconsin, USA