On 3 May 2022, the European Commission has launched the European Health Data Space (EHDS). The EHDS will notably enhance access and use of health data for research, innovation, public health, and policy-making, including the field of rare diseases. It is hoped that the access to high quality and lar...

MetabERN has published a new article in the Lancet Regional Health journal on newborn screening programmes in Europe. The article presents elements identified by the Screen4Rare initiative, in collaboration with the ERNs, in order to achieve effective operation of newborn screening programmes in Eur...

In preparation of Rare Disease Day 2022, this year’s official video has been launched. The video is available in 40 languages and launches the international campaign to shed light on people living with a rare disease. EURORDIS and partners are calling on people worldwide to share this video on the...

The European Commission is funding a call on the development of new effective therapies for rare diseases with the aim of “Tackling diseases diseases and reducing disease burden.” The topic will support proposals covering several different stages in the continuum of the innovation pathway ( tran...

The Senate Health Commission approved the bill for the treatment of rare diseases and support for research and production of orphan drugs, after approval from the Chamber of Deputies. The national law on rare diseases provides a definition for rare diseases, using the prevalence of less than five in...