Latest News View all news Nights to remember: the Black Pearl Awards over the years News Since 2012, the Black Pearl Awards have honoured the outstanding achievements of the rare disease community. Nominate someone now for... Rare Barometer survey launched on rare diseases and social participation News Rare Barometer, the survey initiative of EURORDIS has launched a new global survey on the impact of rare diseases on... EURORDIS welcomes EPSCO call for inclusion of health priorities in EU Strategic Agenda Press release EURORDIS responds to the unanimous conclusions reached by the 27 EU health ministers. EURORDIS: EU4Health must recognise added value of EU action on rare diseases Press release EURORDIS urges the European Commission to address rare diseases in the EU4Health 2025 Work Programme European Parliament Elections 2024: What They Mean for Rare Disease Advocacy News This year’s elections have brought about changes that will undoubtedly impact EU health policies in the coming years. So, what... Rare Barometer to launch a new survey on the impact of rare diseases on daily life News On Wednesday 10 July, Rare Barometer, the global survey initiative of EURORDIS, will launch a survey to measure the social... EURORDIS Welcomes New MEPs, Stressing Urgency of Health on EU Agenda Press release EURORDIS looks forward to working with elected MEPs to enact major health policies within the EU. #ActRare2024: Optimised data for patient and societal benefit News We explore with Professor Dipak Kalra, President of the European Institute for Innovation through Health Data (i~HD), why Europe’s health... White Paper – Newborn Screening for Duchenne Member's Comment The World Duchenne Organization (WDO) is pleased to announce the release of a comprehensive White Paper titled ‘Newborn Screening for... VI ALPE Awards for the best work in favor of people with ADEE, June 2024 Member's Comment The ALPE Awards were established in 2012 to recognize the efforts of people, institutions, researchers and social entities to make... Keep up to date with the latest news, events, and campaigns from EURORDIS Subscribe
