OpenLobby.EU
Explore

BRAINS FOR BRAIN FOUNDATION

B4B

The Brains for Brain Foundation is a non-profit organization dedicated to advancing research and treatment for rare genetic brain diseases, particularly those affecting children.

Lobbying Activity

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

12 Nov 2025

The Brains for Brain (B4B) Foundation strongly supports the objectives of the new European Competitiveness Fund (ECF) to boost Europes strategic capacity and innovation. However, we stress that for the EU to truly secure global leadership and deliver on its commitment to citizens, there needs to be a more holistic and broader definition of innovation in health research and care. Our key message is clear: The European Reference Networks (ERNs), established as the embodiment of excellence in cross-border healthcare, must transition to the permanent, central pillar of specialised rare disease care. We demand that the EU dedicate a substantial, multi-annual financial envelope specifically for the ERNs. This funding must be ring-fenced to ensure it cannot be diluted by broader competitiveness goals. We also call for a decisive shift toward durable, multi-decade frameworks (such as consortia and research infrastructure bonds) to maintain scientific momentum and ensure long-term, tangible patient benefits. This investment is not a cost, but a strategic necessity. It secures Europes scientific excellence and leadership while simultaneously guaranteeing tangible patient equity by delivering high-quality, specialised care across all Member States. The time to secure the future of the ERNs is now. This investment is fundamental to fulfilling the foundational promise of the Cross-Border Healthcare Directive.
Read full response