News

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,…

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…

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…

Edsivo (celiprolol) has been granted a breakthrough therapy designation for COL3A1-positive vascular Ehlers-Danlos syndrome (vEDS) by the U.S. Food and Drug Administration (FDA). The designation is meant to expedite the development and review of medicines that are intended to treat a serious condition, and for which early clinical…

Diagnosing and treating a very rare type of Ehlers-Danlos syndrome (EDS) early would help prevent further complications and potentially improve quality of life for patients with the condition, called arthrochalasia EDS (aEDS), a review study reports. However, the similarities between aEDS and other health conditions make it…

A first case of vascular Ehlers Danlos syndrome (vEDS) occurring with Takayasu arteritis (TAK) — a rare inflammatory condition in blood vessels — was successfully treated with anti-inflammatory therapy, according to a case report. “To the best of our knowledge, this is the first case…

Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over the next five years, according to results from a 2021 survey. Definitive Healthcare, a healthcare commercial intelligence company, conducted…

Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…