ERDERA’s third General Assembly brought partners together in Coimbra to review its second year, strengthen connections across the partnership and align priorities for a more integrated and delivery-focused third year.
ERDERA marked the close of its second year with an Open Session on ultra-rare diseases, bringing together European, regulatory and scientific perspectives on how innovation can reach patients.
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.
EURORDIS’ European Blueprint proposes 18 priority actions across six areas, offering a community-led foundation for a future EU Action Plan on Rare Diseases.
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.
Applications for the 2027 Open Academy x ERDERA Schools offer patient advocates and early-career researchers the opportunity to strengthen their knowledge and participation in rare disease research.
The Open Academy x ERDERA accompanies patient advocates by offering rare-disease specific comprehensive training programmes that empower advocates with the knowledge, skills and confidence they need to engage with different stakeholders as equal partners.
ERDERA (the European Rare Diseases Research Alliance) has opened its Clinical Trial Call to support multinational early-phase clinical trials in rare diseases. The call will fund studies designed to generate robust clinical evidence, strengthen regulatory readiness and make rare disease trials more feasible across countries.
