News

At-home Exercises May Help Shoulder Function in Hypermobile EDS

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…

Genetic Testing May Identify New Gene Mutations in EDS: Study

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 in Molecular…

‘Acts of Awareness’ Welcome in May, Marking EDS and HSD Month

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…

Organizations Rally to Help Ukrainian Rare Disease Patients

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,…

Europe Awaits Proposed New Framework for Sharing Health Data

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…