Marisa Wexler, MS, senior science writer —

Lesions in the abdominal aorta — the lower part of the large blood vessel that carries blood from the heart out to the rest of the body — are common among people with vascular Ehlers-Danlos syndrome (vEDS), a new study highlights. “The main finding of the present study is…

Poorer bone density and mineral content can be common in people with hypermobile Ehlers-Danlos syndrome (hEDS), likely as a result of reduced physical activity, a study indicates. “Based on the results of this study, we suggest that health care workers recommend, like in healthy individuals, regular physical activity and…

As people with vascular Ehlers-Danlos syndrome (vEDS) age, their risk of damage to the aorta, a large artery carrying blood from the heart to the body, rises, a study suggests. The study, “Assessment of arterial damage in vascular Ehlers-Danlos syndrome: A retrospective multicentric cohort,” was published…

Researchers have identified a rare type of disease-causing mutation, called a multi-exon deletion in the COL5A1 gene, in a girl with classical Ehlers-Danlos syndrome (cEDS). The girl inherited the disease from her father, who showed no symptoms but carried the mutation in some of his cells but not…

Signs of dysfunction in small nerve fibers, the nerve cells mainly responsible for detecting sensations like pain, are found in people with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD), according to a large retrospective study. Assessing these abnormalities could help better classify people with hEDS or HSD based…

Aytu BioPharma has launched a Phase 3 trial, called PREVEnt, to evaluate its experimental oral treatment AR101 (enzastaurin) in people with COL3A1-positive vascular Ehlers-Danlos Syndrome — vascular EDS or vEDS — a severe subtype of the disease. “We are excited about the progression of this global clinical trial evaluating…

Imbalances among sensory signals may contribute to the chronic pain experienced by people with hypermobile Ehlers-Danlos syndrome (hEDS), according to a report. In addition, exercise-induced hypoalgesia or EIH — a generalized reduction in pain and pain sensitivity that typically occurs during and after exercise — appears to be reduced…

The Ehlers-Danlos Society has announced $400,000 in funding for a new research project that seeks to shed light on the biology of hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). The study aims to enroll 50 people diagnosed with hEDS, and another 50 with HSD, all of…

Gamers Outreach and Xbox are working together to promote a documentary that showcases how gaming can help to forge connections among people with rare diseases like Ehlers-Danlos syndrome (EDS). The five-minute film, called “Beyond Xbox: A Player Like Me,” tells the story of Jordan, a 14-year-old from…

The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…