VASCERN Participates in ERN Coordinators Working Group Meeting in Vienna

VASCERN participated in the ERN Coordinators Working Group meeting in Vienna on 10-11 February 2026, where coordinators from all 24 European Reference Networks discussed the future of rare disease care in Europe and a crucial call to action for the rare disease community.  

ERN coordinators meet to discuss ERN sustainability and rare disease declaration

The ERN Coordinators Working Group convened in Vienna on 10-11 February for its regular meeting to discuss strategic priorities, share best practices, and address challenges facing the European Reference Networks. VASCERN’s Coordinator, Professor Guillaume Jondeau, and Project Manager, Julie Hallac, joined the meeting online.

The two-day agenda covered critical topics including ERN sustainability beyond current EU funding cycles, data governance and interoperability, patient engagement strategies, and collaboration opportunities across the 24 ERNs. A central focus was discussions on the Declaration on a European Innovation and Care Ecosystem for Rare and Complex Diseases, launched during the High Level Meeting for Rare and Complex Diseases (HLM Rare) in December 2025.

This declaration lays out 8 priority actions, covering critical topics including EU Action Plan governance, workforce development, equitable access to diagnostics and treatments, clinical trial leadership, research infrastructure, data interoperability, innovative funding models, and securing dedicated ERN funding for 2028-2034.

The meeting also addressed operational challenges across ERNs, including disease coverage coordination, registry development, governance structures, and research alignment. A major workshop on Orpha Codes and disease coverage brought all 24 ERNs together to harmonise approaches and ensure comprehensive coverage of rare diseases across Europe.