The European Commission has launched a consultation on the Multiannual Financial Framework (MFF), the EU’s long-term budget plan for 2028-2034. Currently, rare diseases are not explicity mentioned, and the EU4Health programme is no longer presented as a standalone initiative.
European Reference Networks (ERNs), established in 2017, have become a cornerstone of the EU ‘s strategy to improve diagnosis, treatment, and care for people living with rare complex and conditions. By connecting healthcare providers and specialists across Member States, ERNs ensure access to highly specialized care in the rare diseases field. The absence of ERNs and rare diseases in the current MFF draft highlights the need to show their continued value and ensure they remain among Europe’s shared health priorities.
Following the initiative of Endo-ERN, ERN-EYE invites its representatives to provide feedback to the Commission, emphasizing the importance for explicit inclusion and funding for ERNs and rare diseases in the next MFF.
We now encourage all members of the ERN-EYE community, as well as those in the rare disease community, to share their point of view. The Commission adoption process is open until 12 November 2025 (midnight Brussels time).
How to participate :
- Go to the website and scroll down until you see Commission adoption Feedback: Open
- Log in using your EU Login account (or create one if you don’t have an account). Once logged in, you can submit your feedback.
Copy and paste the following text or adapt it as you think most appropriate:
“Explicit inclusion of European Reference Networks (ERNs) in the ECF is vital for health competitiveness and rare disease care
The current proposal for the European Competitiveness Fund (ECF), specifically Chapter V (Articles 36 and 37) on Health, biotech, agriculture and bioeconomy, aligns perfectly with the mission of European Reference Networks (ERNs). ERNs are a proven success story, central to the EU’s health strategy for the estimated 30 million patients with rare and complex diseases.
However, the omission of explicit mention of ERNs or rare and complex diseases in the ECF proposal is a critical oversight.
We urge the Commission to explicitly include and fund ERNs within the ECF, as they are a unique, essential infrastructure that:
- Boosts Competitiveness: ERNs advance innovative health technologies, research (via disease registries), and high-level training (ERN Academies), directly contributing to Europe’s global edge in specialized health and biotech.
- Strengthens Health Systems: ERNs ensure equitable access to highly specialized care across borders through tools like the Clinical Patient Management System (CPMS) and by developing standardized clinical guidelines and care pathways.
- Ensures Cohesion: Dedicated, sustained funding for ERNs will support their crucial integration into national healthcare systems via national coordination hubs, guaranteeing that specialized knowledge benefits all citizens, regardless of the rarity of their condition.
Including ERNs prominently will solidify the MFF’s commitment to European competitiveness, resilience and solidarity. “
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You can also add supporting research or other documents that support your ideas as an attachment. Once submitted, please consider sharing this article with your network involved in rare disease. We would also be grateful if you could notify the project management office that you submitted feedback.