In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Rhabdoid tumors in clinic and research: From basic biology to the patient bed” aimed at discussing the current clinical standard of treatment in rhabdoid tumors, as well as the controversies in the rhabdoid tumors regimen is being organized by Dr. Pascal Johann of the Universitätsklinikum Augsburg. The in-person event will…
The International Rare Diseases Research Consortium (IRDiRC) is pleased to announce today the release of its Rare Diseases Research Initiatives State of Play 2019-2021 Report. This report is based on scientific articles and press releases published between 2019 and 2021; it seeks to inform stakeholders and the rare diseases community about the developments and observed…
The recording of Science’s webinar on innovation hubs as a viable option to address rare diseases, that took place on May 26th, is now available to watch on their website. This webinar brings together key opinion leaders to discuss the current and future needs of patients, and how innovators, doctors, scientists, drugmakers, and policymakers can…
The World Duchenne Awareness Day, taking place each year on September 7th, is the official campaign to raise awareness for people living with Duchenne & Becker muscular dystrophy. Each year, an educational theme is chosen; this year’s theme is Women and Duchenne. Through the creation of specific educational materials, the event will highlight all the…