Author Archives: Marisa Wexler MS

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…

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…

Following a meeting with the U.S. Food and Drug Administration (FDA), Acer Therapeutics is planning to launch a potentially pivotal clinical trial to evaluate the safety and efficacy of its investigational therapy Edsivo (celiprolol). Edsivo was found in a small earlier trial to significantly reduce the rate of…

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…

The Ehlers-Danlos Society is now accepting applications for the second round of two grant programs intended to support research projects focused on Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD). HSD comprises a group of medical conditions associated with joint hypermobility. These disorders are usually diagnosed once all…

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases.  “The RareLaunch program is…

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

People with classical Ehlers-Danlos syndrome (EDS) appear to have less multi-organ involvement than those with other types, suggesting that the diagnostic criteria for this type of EDS may require an update, according to a recent study. The study, “Multisystemic manifestations in a cohort of 75 classical…

A new screening system will allow people with hypermobile Ehlers-Danlos syndrome (hEDS) to participate in the worldwide Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) study without an in-person visit, the Ehlers-Danlos Society announced in a press release. The changes will help “to break down geographical barriers in research…