The ERN Coordinators Group (CG) met on 10–11 February 2026 in a hybrid format, with both in-person and online participation. The meeting was hosted in Vienna, Austria, by CG Chair Ruth Ladenstein at the St. Anna Children’s Cancer Research Institute.
ERN eUROGEN was represented online by our Coordinator, Prof. Peter Mulders, and Programme Manager, Michelle Battye.
The first day featured an intensive programme. The morning focused on follow-up actions from the High-Level Meeting on Rare Diseases held in Brussels in December 2025. Eight new working groups will now be established, and ERN Coordinators have been invited to participate in at least two groups each, reinforcing collective responsibility and cross-ERN collaboration.
The afternoon session included updates from the ERN Working Groups, including discussion of the ERN CG Quintet proposal to revise the current governance structure of the ERN Working Group on Management Activities.
On the second day, discussions centred on the proposed expansion of ERN disease areas. A particularly useful presentation from Orphanet clarified outstanding points that need alignment across the 24 ERNs, with the aim of securing approval for the proposed changes at the next Board of Member States meeting in May.
The meeting concluded with a discussion on collaboration with EURORDIS. Ruth presented the results of a recent survey on patient engagement across all 24 ERNs, which will help inform her upcoming discussions with the new CEO of EURORDIS.
