The European Medicines Agency has begun a formal review of Tavneos (avacopan) after emerging information raised questions about the integrity of key clinical trial data supporting its EU authorisation, with potential implications for adults living with rare autoimmune vasculitis.
On 24 February, in Brussels and online, EURORDIS will bring the rare disease community together for its fifteenth Black Pearl Awards ceremony, held in the lead‑up to Rare Disease Day.
Following the 11 December 2025 political agreement, EU institutions are moving towards formal adoption of a new Directive and Regulation that will reshape how medicines—including orphan and paediatric medicines—are developed, authorised and supplied across the European Union.
Experts from Europe’s major health data initiatives met virtually to discuss how the European Genomic Data Infrastructure is supporting partner projects, and why sustained collaboration is central to Europe’s wider health and research data ambitions.
Annual awards celebrating outstanding achievements by people living with a rare disease and those making a difference across the rare disease community (patient advocacy, policy, science, care, industry and beyond).
Rare disease researchers, clinicians, patient advocates and data experts are invited to help shape four new IRDiRC activities linked to the new IRDiRC Roadmap, with applications closing on 20 February 2026.
