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Mortality rates following surgery for certain complications of the aorta — the main artery that carries blood away from the heart — are low among people with Ehlers-Danlos syndrome (EDS), a study has found. But non-elective or emergency hospital admissions were linked to a greater mortality risk, data show.

Young women with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) have low bone mineral density and significant gastrointestinal issues, a study has found. These complications may be linked to lower protein consumption that has a lasting effect on bone health, the researchers suggested. The study, “…

Screening and monitoring of arteries — the blood vessels carrying blood from the heart to other organs — in adults with vascular Ehlers-Danlos syndrome (vEDS) is common practice in Europe, despite a lack of clear guidelines, a study reports. In contrast, arterial monitoring in young children without symptoms should…

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…

Spinal fusion surgery is not associated with additional complications for adults with Ehlers Danlos syndrome (EDS) compared with other patients undergoing the surgery, according to a large-scale analysis of insurance database information. The most common reason for additional surgery in EDS patients five years after the initial spinal surgery…

People with hypermobile joints participate less in social activities due to chronic pain, according to a recent study that compared patients with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) with those with classical and vascular forms of the disorder. “The results of the present study demonstrate that…

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…

Chronic pain and fatigue are common symptoms among people with vascular Ehlers-Danlos syndrome (vEDS) and Loeys-Dietz syndrome (LDS), a Norwegian study has found. While the symptoms were linked to each other, they were each also associated with the presence of sleep problems and a greater multi-organ disease burden,…

Note: This story was updated July 13, 2022, to correct the name of Rare-X’s CEO Charlene Son Rigby. Nonprofits, scientists, governmental organizations, and the rare disease drug development industry have long cited 7,000 as the average number of rare diseases in the world.

Evidence-based, at-home exercise programs may ease shoulder instability in women with hypermobile Ehlers–Danlos syndrome (hEDS) and those with hypermobile spectrum disorder (HSD), a small study suggests. Two six-month programs — one based on the latest hEDS/HSD research and another on shoulder instability research — led to comparable, clinically…