The European Commission has published the results of its public consultation on the next Multiannual Financial Framework (MFF), and the message from the rare disease community is clear: European Reference Networks (ERNs) matter.
ERN eUROGEN warmly thanks all network members, ePAG representatives, clinicians, patients, and partners who took the time to contribute. The Commission will now summarise and present all responses to the European Parliament and the Council in the coming two months, helping to inform the ongoing legislative debate.
High Engagement From the Rare Disease Community
The consultation, which closed on 12 November 2025, received a high number of responses from ERN healthcare providers and clinicians, patient organisations and patients, and medical societies, calling for the inclusion of the European Reference Networks (ERNs) in the MFF.
In total, there were 673 feedback responses, with 493 published as “unique feedback” on the EC webpage. Of these:
- 66% focused specifically on ERNs,
- 9% were related to other health topics (e.g. ringfencing the health budget and non-rare diseases), and
- 25% addressed broader issues (e.g., industrial policy).
This strong participation highlights widespread concern about the future of EU support for rare diseases and the ERN system.
Why the Consultation Matters
The European Commission’s public consultations ensure transparency, inclusiveness, and democratic participation in the shaping of EU legislation. They allow citizens, healthcare professionals, patient organisations, and civil society to directly influence policy development.
The robust response from the ERN community demonstrates the essential role that ERNs play in improving care for patients with rare and complex diseases – and the importance of safeguarding their funding.
Background: Major Changes Proposed for the Next EU Budget
On 16 July 2025, the European Commission published its draft proposal for the EU Budget 2028–2034 – a key document that will shape Europe’s priorities for the years ahead.
A significant change was the removal of a dedicated Health Programme. The EU4Health programme – which currently funds ERN coordination grants – will be integrated into the new European Competitiveness Fund (ECF), a fund primarily aimed at industrial competitiveness.
Crucially, ERNs and rare diseases are not mentioned in the ECF. This omission raised serious concerns across the rare disease community and prompted coordinated advocacy efforts.
Next Steps: Ensuring ERNs Are Included in the MFF
The ERN Coordinators Group is actively engaging with Members of the European Parliament (MEPs) and national representatives to ensure that rare diseases and ERNs are explicitly referenced in amendments to the MFF, particularly in Chapter V: Health, Biotech, Agriculture and Bioeconomy (Articles 36 and 37).
The strong response to the public consultation provides important political momentum for these discussions.
