News

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…

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…

A genetic testing technique called next-generation sequencing (NGS) may help unveil unrecognized disease-causing mutations linked with Ehlers-Danlos syndrome (EDS) and related disorders, a Polish study suggests. The study, “Next-Generation Sequencing of Connective Tissue Genes in Patients with Classical Ehlers-Danlos Syndrome,” was published in Current Issues…

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

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…