Reactie VSOP consultatie EU health budget
10-11-2025
Utrecht, 9 November 2025
The Honourable Ursula von der Leyen
President of the European Commission
Berlaymont Building
Rue de la Loi 200
1049 Brussels, Belgium
Fund the European Reference Networks (ERNs): They Matter for Patients, Innovation, and Europe’s Health
Dear President von der Leyen,
We would like to express our strong support for the continued recognition and funding of the European Reference Networks (ERNs) within the EU’s Multiannual Financial Framework (MFF). In the current draft of the MFF, the EU4Health programme is no longer included as a standalone initiative, and rare diseases - along with the ERNs - are not explicitly mentioned. This makes it even more important to emphasize the achievements and ongoing value of these networks for Europe’s health, innovation, and competitiveness.
The ERNs are one of the EU’s most tangible success stories in health connecting specialists across borders to improve diagnosis, treatment, and research for people living with rare and complex diseases.
As the Dutch national alliance for rare diseases (VSOP) we represent nearly 100 Dutch patient organizations for rare diseases and we know how much value the ERNs bring to Europe’s health and innovation agenda:
- Improving access to expertise: For people living with rare diseases, access to the right expert can be life-changing. ERNs make it possible for patients and healthcare professionals to access specialist knowledge across borders.
- Registries and data: ERN registries enable experts to deepen their understanding of rare diseases by collecting patient data from across Europe and beyond. This collaborative approach fosters research and improves care.
- Guidelines and care pathways: ERNs develop and endorse evidence-based clinical guidelines and standardized care pathways for rare conditions. These resources ensure patients receive high-quality, consistent care across Europe, while reducing inequalities in diagnosis and treatment. By coordinating expert consensus and sharing best practices, ERNs support national healthcare systems in achieving excellence for every patient, regardless of where they live.
- Training and education: ERNs play a key role in building knowledge and fostering collaboration across Europe by offering educational opportunities for healthcare professionals and patient communities.
- Patient involvement: A defining feature of the ERNs is the close collaboration between healthcare professionals and European Patient Advocacy Groups (ePAGs). Patient representatives play an active role in shaping priorities, co-developing educational initiatives, and ensuring that the patient perspective remains central to all activities. Their contribution is invaluable in ensuring that ERNs’ work truly reflects the needs and realities of those living with rare and complex conditions.
These achievements demonstrate that the ERNs already deliver on the EU’s goals for health resilience, innovation, and competitiveness. Sustained and explicit EU support is essential to ensure that this cross-border expertise continues to benefit patients and healthcare systems in every Member State.
We therefore urge the European Commission to explicitly include and fund the European Reference Networks in the next MFF and European Competitiveness Fund (ECF).
Thank you for your continued commitment to improving the lives of people with rare and complex diseases.
Sincerely,
Maria Kortekaas
President VSOP – National Alliance for Rare Diseases, The Netherlands