Latest News View all news EURORDIS Reacts to Translarna Review: Trust in Scientific Evidence Press release EURORDIS calls for a public stakeholder meeting following recent developments concerning the conditional marketing authorisation for Translarna. Sign the Open Letter to Future EU Policymakers News As a result of and informed by the planned sessions’ aims of the 12th ECRD, an Open Letter addressed to... EURORDIS welcomes new members to its Board of Directors News The elections saw the appointment of six members to the Board of Directors, including four re-elected and two newly elected... EURORDIS launches call for applications to Digital & Data Advisory Group (DAG) News EURORDIS – Rare Diseases Europe is inviting applications to our Digital and Data Advisory Group (DAG). ECRD 2024 culminates with conclusive calls ahead of EU elections News Our 12th European Conference on Rare Diseases & Orphan Products (ECRD 2024) has concluded after two days of intensive and... Major survey reveals lengthy diagnostic delays for rare disease patients Press release EURORDIS reveals findings from a Rare Barometer survey highlighting prolonged and inequitable diagnostic journeys. #ActRare2024: Life with MCOPS12 and how European action can make a difference News We spoke with Reinhard Pell, of Cure MCOPS12, to discuss navigating life with an ultra-rare disease and the role Europe's... ECRD 2024: A Faster Path to Diagnosis for Children with Rare Diseases News As part of EURORDIS' Rare Barometer survey initiative, findings have underscored the need for European policymakers to act, with strong... Major survey reveals rare disease community’s overwhelming support for screening at birth Press release EURORDIS unveils new insights from a Rare Barometer survey, with Screen4Care, on newborn screening. Solène Jouan: Enrico Letta’s report and rare diseases in the single market Staff Blog Solène Jouan dives into Enrico Letta's report on the single market, and what it could mean for rare diseases. Keep up to date with the latest news, events, and campaigns from EURORDIS Subscribe
