Established in 2012, the EURORDIS Black Pearl Awards recognise contributions across the rare disease community. The programme will return to Brussels and online on 15 February 2027.
On 13 November 2026 in Dublin, Ireland, this event will explore how research, innovation, patient partnership and EU policy can improve rare disease care and strengthen Europe’s life sciences ecosystem.
An International Rare Diseases Research Consortium (IRDiRC) working group developed practical guidance and a checklist for involving young people meaningfully in rare disease research.
A rare disease patient advocate reflects on Zoya’s Law, early diagnosis, and why patients are a crucial stakeholder in research, policy, and national rare disease systems.
