Medical & Scientific News

Gift to support wide range of inquiry from bench-to-bedside, social, and psychological studies to behavioral research involving the Ehlers-Danlos syndromes, hypermobility spectrum disorders, related symptoms, and associated conditions—worldwide. BALTIMORE, MD — The Ehlers-Danlos Society has received a $200,000 gift from one of its generous benefactors to accelerate new research into the Ehlers-Danlos syndromes (EDS), hypermobility […]
EDS Comorbidity Coalition to create a global resource for practical guidance in the assessment and management of all types of Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), their related symptoms, and associated conditions. AUGUST 22, 2018, BALTIMORE, MD — Thanks to the generosity of a major donor, The EDS Comorbidity Coalition—a partnership established in 2016 […]
AUGUST 9, 2018 – The Ehlers-Danlos Society funds research at all stages, scopes, and scales. Our microgrants provide funds to early-stage investigations primarily designed to provide evidence or “proof of concept” to encourage larger studies. We are pleased to announce our first group of successful applications that include research into aspects of chronic pain, dental […]
Summary by Dr. Rubina Aktar, PhD In the past 15 years, scientific advances have shown that bowel symptoms are very common in hypermobility related disorders, and in particular, hypermobile Ehlers-Danlos Syndrome (hEDS). This group of patients have a problem with the extracellular matrix (ECM), which is the scaffold that supports joints and organs. Patients with […]
A new, autosomal recessive type of Ehlers-Danlos syndrome has been discovered; it is very rare, so far found in only four individuals from three unrelated families. Exome sequencing (which looks at a subset of DNA—the genes that are responsible for proteins—and describes how those genes are assembled) revealed unusual variations in the AEBP1 gene. These […]
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 […]
We are very pleased to report that following an effort led by Dr. Brad Tinkle with support from pharma companies and the International Consortium on Ehlers-Danlos syndromes and Related Disorders, a proposed change to the ICD-10 diagnosis codes was presented at the recent committee meeting. It will go for public opinion then be voted on […]
The International Consortium on Ehlers-Danlos Syndromes and Related Disorders was created following the 2017 diagnostic criteria and management and care guidelines. The Consortium is an independent group of medical professionals and patient experts committed to progress, research, and collaboration in the field, to work on the many challenges and research questions faced by families, clinicians, […]
The Ehlers-Danlos Society has assisted Genomics England with the EDS gene panel for the 100,000 Genomes Project. The EDS panel has been reviewed by members of the International Consortium for Ehlers-Danlos syndromes and related disorders. The Society were contacted by the team working on the 100,000 Genomes project following the work surrounding the new diagnostic […]
Abstract Background: Generalised Joint Hypermobility (GJH) is a hereditary condition with an ability to exceed the joints beyond the normal range. The prevalence of GJH in the adult population and its impact on upper body musculoskeletal health and quality of life has mostly been studied in selected populations. The aims of this study were therefore, […]