Category: Medical & Scientific News

hEDS Genetic Research Study

The Ehlers-Danlos Society announces worldwide research study to identify the genetic cause of hypermobile Ehlers-Danlos syndrome

The Ehlers-Danlos Society is excited to announce the start of recruitment for participants in the Hypermobile Ehlers-Danlos Syndrome Genetic Research Study, devoted to finding the underlying genetic markers for hypermobile EDS (hEDS). Since the announcement of the extraordinary “Moonshot” donation in early 2018, which was then followed by a generous matching donation in early 2019,
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Ehlers-Danlos Society Receives Major Gift To Accelerate Research Into Rare Genetic Disorder and Associated Conditions

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
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Ehlers-Danlos Collaborative Puts Patients First to Advance EDS and HSD Diagnosis, Management, & Care

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
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The Ehlers-Danlos Society announces first round of microgrant funding

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
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A New Type of Ehlers-Danlos Syndrome Discovered

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
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ICD-10 Codes Changes Proposed for the Ehlers-Danlos Syndromes

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
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The EDS International Consortium identifies Common Data Elements as next collaborative goal

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,
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The 100,000 Genomes Project Releases EDS Gene Panel

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
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