Rare Barometer Survey on Rare Diseases and Social Participation Launched
EURORDIS-Rare Diseases Europe launched the Rare Barometer survey to explore the impact of rare diseases on everyday life. This global survey is open to...
EU Urged to Prioritize Rare Diseases: Open Letter Calls for Action
The Rare Disease community has urged future EU policymakers to prioritize rare diseases in upcoming health policies. This call to action emerged from the...
EURORDIS Seeks Members for Digital Health Advisory Group
Rare Diseases Europe (EURORDIS) has announced a call for applications to join its Digital Health and Data Advisory Group (DAG). The group aims to...
Rare Diseases Survey by EURORDIS to Explore Social Participation and Independent Living
Rare Barometer, a key survey initiative by EURORDIS – Rare Diseases Europe, will unveil a significant new survey focusing on social participation and independent...
Rare Diseases Advocacy: EURORDIS Launches ActRare2024 to Enhance EU Healthcare Policies
Rare Diseases Europe (EURORDIS), a leading advocacy group, has launched the ActRare2024 campaign, aiming to shape European healthcare policies to better support the 30...
Survey Highlights Strong Support for Newborn Screening in Rare Disease Community
Rare Diseases Europe (EURORDIS) has released key insights from a major survey focusing on newborn screening for rare diseases, executed under their Rare Barometer...
A Blueprint for Modernizing the European Single Market: Proposals for a Unified Healthcare Strategy
Former Italian Prime Minister Enrico Letta unveiled a comprehensive report commissioned by the European Council in June 2023, titled 'Much More Than a Market,'...
European Disability Card Approved, Boosting Access and Mobility Across EU
Rare Diseases Europe (EURORDIS) has expressed its satisfaction following the European Parliament’s recent approval of the provisional agreement on the European Disability Card along...
European Parliament Votes to Transform Pharmaceutical Laws for Rare Diseases
The European Organisation for Rare Diseases (EURORDIS), a leading voice for patients with rare diseases, has expressed strong approval following the European Parliament's latest...
