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…
Acer Therapeutics expects to launch its pivotal Phase 3 DiSCOVER clinical trial — which will test Edsivo (celiprolol) in patients with COL3A1-positive vascular Ehlers-Danlos syndrome (vEDS) — by the end of June. The announcement follows an agreement between Acer and the U.S. Food and Drug Administration (FDA)…
From committing repeat “acts of awareness” to participating in social media challenges, supporters globally are marking Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) month, observed each May. The month is set aside to bring attention to the group of genetic disorders affecting the connective tissues that give structure to…
A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…
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