Latest News View all news European Parliament establishes new Intergroup on Cancer & Rare Diseases Press release EURORDIS, the European Cancer Organisation, and the European Society for Paediatric Oncology welcome the initiative. “La Vida en Una Gota”: A Journey of Hope and Advocacy for Newborn Screening Member's Comment This Member Comment article was shared with EURORDIS by our member organisation, MasVisibles. A recap of the conference in Budapest: ‘For an EU Commitment to Tackling Rare Diseases’ News A summary of the conference held by the European Economic and Social Committee in November 2024. EURORDIS-Rare Diseases Europe in 2025 News EURORDIS Chief Executive Officer Virginie Bros Facer reflects on the achievements of 2024 and shares her vision for 2025. Health Technology Assessments in 2025: What changes are coming? News We explore key changes coming with the EU HTA Regulation and what they mean for rare disease patients. Overcoming Stigma: Kate Tyler on life with congenital anomalies and finding self-acceptance Community Kate Tyler reveals the physical, emotional, and social challenges of living with congenital anomalies, and the importance of feeling accepted. EU conference prepares for comprehensive European action on rare diseases Press release EURORDIS welcomes the culmination of the EESC conference’s calls for a European Action Plan for Rare Diseases by 2030. EURORDIS welcomes the milestone 5-year evaluations of the European Reference Networks Press release EURORDIS celebrates 92% of the European Reference Networks being rated as “Excellent” or “Very Good” in achieving their objectives. EURORDIS congratulates new European Commissioners on their confirmation Press release EURORDIS responds to the European Parliament voting to confirm the new European Commissioners. François Houÿez: Enhancing the use of real-world data in non-interventional studies Staff Blog François Houÿez, our Information & Access to Therapies Director, discusses how real-world data can enhance research and patient care. Keep up to date with the latest news, events, and campaigns from EURORDIS Subscribe
