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ERN eUROGEN

ERN eUROGEN

24 European Reference Networks (ERNs) facilitate discussion on rare diseases and complex conditions requiring highly specialised treatment and concentrated knowledge and resources.

Lobbying Activity

Response to EU’s next long-term budget (MFF) – EU funding for competitiveness

23 Oct 2025

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 Europes 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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