ERN-industry partnerships achieve what no single actor has the capabilities to tackle alone, such are the multifaceted challenges inherent in rare disease research.
On 24 September 2025, MEPs Stine Bosse (Renew Europe, Denmark) and András Kulja (EPP, Hungary) hosted a high-level conference in the European Parliament to explore how public-private partnerships in rare disease research can unlock new therapies and boost EU innovation and competitiveness.
Bringing together major stakeholders in the European rare disease research ecosystem, including MEPs, the European Commission, ERN coordinators, patient representatives, trade associations and industry, this was a richly detailed and action-driven discussion which highlighted the success, potential but also barriers to ERN-industry collaboration.
Public-private partnerships (PPPs) involving European Reference Networks (ERNs) and the pharmaceutical industry have emerged as powerful tools to accelerate rare disease research and innovation. By leveraging the expertise of ERNs, the capabilities of industry stakeholders, and the input of patient communities, these collaborations contribute not only to improved health outcomes for 27-36 million Europeans living with a rare disease, and also galvanise the EU’s competitiveness in the global life sciences arena.
Panellists how such partnerships address research gaps, enhance innovation capacity and support the EU’s strategic objectives, including fostering economic growth, scientific leadership, and patient-centric care.
Watch the recording here
Speakers
Agenda
12:00 – Networking lunch for all guests
13:00 – Turning collaboration into impact for rare disease research and EU competitiveness
13:05 – Charting the path ahead through policy, partnerships and European leadership in rare disease research
13:15 – Multistakeholder perspectives to unlock the potential of public-private partnerships in rare disease research and diagnosis on Europe’s emerging legislative framework
14:50 – From dialogue to action: consolidating insights and advancing the EU agenda on rare diseases to boost our competitiveness