Rare Cancers, Rare Diseases and ERNs must remain visible in the EU’s future budget

The European Commission has opened a consultation on the draft Multiannual Financial Framework (MFF) — the EU’s long-term budget plan.
In the current proposal, rare diseases are not explicitly mentioned, and the EU4Health programme no longer appears as a standalone initiative.

This omission raises significant concerns for the entire rare disease community — including those affected by rare cancers, who depend on coordinated European action and funding to drive research, diagnosis, and access to expert care.

European Reference Networks (ERNs) — established by the European Commission in 2017 — have become a cornerstone of the EU’s strategy to improve diagnosis, treatment, and care for people living with rare and complex conditions. For people with rare cancers, the ERN system (notably EURACAN) is often the only structured mechanism ensuring access to specialized expertise and cross-border collaboration.

The absence of ERNs, rare diseases, and rare cancers from the current MFF proposal highlights the urgent need to reaffirm their value and ensure they remain at the heart of Europe’s shared health priorities. We urge members of the EURACAN community, as well as the wider rare disease and rare cancer community, to make their voices heard. The Commission adoption process is open until 12 November 2025 (midnight Brussels time).

How to Give Feedback to the Commission Adoption Process

1. Go to the consultation website and scroll down until you see “Commission adoption Feedback: Open.”
2. Click “Give Feedback.”
3. You will be directed to the EU Login page. If you don’t yet have an account, you can easily create one.
4. Once logged in, you can submit your feedback.

You may use or adapt the following suggested text:

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.