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.

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 by connecting healthcare providers and specialists across Member States. The omission of ERNs and rare diseases from the current MFF proposal highlights the importance of demonstrating their continued value and ensuring they remain part of Europe’s shared health priorities.

Endo-ERN has invited primary and substitiute representatives to give feedback to the Commission adoption process highlighting the need for explicit inclusion and funding of ERNs and rare diseases in the next MFF.

We now urge members of the Endo-ERN community, as well as those in the rare disease community at large to have their say. The Commission adoption process is open until 12 November 2025 (midnight Brussels time).

How to give feedback to the Commission adoption process?

Go to the website and scroll down until you see Commission adoption Feedback: Open

Click on Give Feedback

You will land on the EU login page. If you don’t have an EU login account you can very easily set one up. Once you have logged in you are invited to give your feedback.

Cut and paste the following 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.

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You can also attach research or finding that supports your ideas as an attachment. We have drafted a letter to the President of the European Commission that highlights the work of our members and asks clearly for rare disease to be included. Please update the letter with the date and your information and please attach.

Once you have completed your submission may we ask you to send this article to someone in your network that is involved in rare disease. It would also be highly appreciated if you would notify the project office that you submitted feedback.