MEPs Stine Bosse (Renew Europe, Denmark) and András Kulja (EPP, Hungary) invite you to a high-level conference in the European Parliament, exploring how public-private partnerships in rare disease research can unlock new therapies and boost EU innovation and competitiveness.
Rare diseases affect over 30 million Europeans, yet they remain under-researched and underserved due to their complexity and low prevalence.
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 but also to the European Union’s competitiveness in the global life sciences arena.
The event will explore 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.
Event details
When: 12:00-15:00, 24 September 2025
Where: European Parliament, Brussels (SPINELLI 5G1)
Meeting point: Station Europe, Espace Léopold, Place du Luxembourg, 1050 Brussels
Agenda
| 12:00 – Networking lunch for all guests | |
| 13:00 – Turning collaboration into impact for rare disease research and EU competitiveness Introduction | Sheela Upadhyaya, Chair of Together For Rare Diseases |
| 13:05 – Charting the path ahead through policy, partnerships and European leadership in rare Disease research Keynote speech | MEP Stine Bosse, Vice-Chair of the SANT Committee |
| 13:15 – Multistakeholder perspectives to unlock the potential of public-private partnerships in rare disease research and diagnosis on Europe’s emerging legislative framework Panel discussion | TBA |
| 14:50 – From dialogue to action: consolidating insights and advancing the EU agenda on rare diseases to boost our competitiveness Concluding remarks | MEP András Kulja, Member of the SANT Committee Sheela Upadhyaya, Chair of Together For Rare Diseases |