The 24 ERN Coordinators meet regularly with the European Commission (EC) to drive forward the work of the ERNs, and 4 October 2022 saw the first face-to-face ERN Coordinators Group (CG) meeting in Brussels after the COVID-19 pandemic meant the discussions became virtual. The next day, an ERN Board of Member States (BoMS) meeting was held
The managers of the ERN networks are also invited to the ERN CG meetings. Hence, Prof Wout Feitz (ERN eUROGEN HCP Network Coordinator Representative) and Michelle Battye (ERN eUROGEN Programme Manager) represented ERN eUROGEN.
The headline messages from the meeting were:
- An internal EC reorganisation means a whole new team dealing with the ERNs in DG SANTE within the EC, and the physical location of this team will move from Brussels to Luxembourg. The size of the team will also be reduced.
- Wout clarified at the meeting that EC support will continue until the end of the EU4Health Programme (2027) and that the ERNs would be included in the following seven-year programme. This ensures the future sustainability of the ERNs.
- A report is in progress relating to applying the Financing Not Linked to Costs model to the ERN activities and grants. Meetings will be held with the EC and the ERNs in October to clarify the impact on the ERNs.
Dissemination & Collaboration:
- An agenda point requested EC support for setting up a Working Group on ERN Management Activities. This point was also included in the Board of Member States (BoMS) meeting on 5 October, and Michelle and Diana Marinello (ERN ReCONNET Project Manager) were asked to present this point. It was agreed at both meetings, and the next informal Network Managers meeting will be on 20 October. There are many areas where some harmonisation of ERN internal policies and procedures would be useful, along with closer discussions with the EC on grant management.
- Recent global political developments on rare diseases have seen the WHO support the call from the patients for a Global Network for Rare Diseases, which could connect to the ERN model in Europe.
- The evaluation of the 24 ERNs has started, including the whole ERN system, each ERN as a network, and each healthcare provider within the original network (the members in 2017, not including the former UK healthcare providers). In ERN eUROGEN’s case, this is 23 healthcare providers.
- IBM won the contract to design the new CPMS. ERN eUROGEN will be active on all business development groups, so please send feedback on any changes you want to see to Darren Shilhan. We have a golden opportunity to shape the CPMS into a tool you can use quickly and regularly.
- Wout and Michelle strongly advocated the continuation of the ERN Exchange Programme beyond 31 January 2023.
The agenda and documents from the ERN CG meeting are all available on the ERN Collaborative Platform (ECP): Library > WP2 – Dissemination and Collaboration > Collaboration > Working Groups > ERN Coordinators Group > Meetings > 2022 > 2022-10-04. (ECP User Guide.) We will notify you when the minutes are available.
