We are delighted to share with you the almost final agenda of our event “Building a Research and Innovation Ecosystem for Rare Diseases,” taking place on 29 April 2025, from 14:30 to 16:30, at the European Parliament in Brussels, Room P4B001.

This important event is organized by the Brains for Brain Foundation and will be kindly hosted by MEP Vytenis Andriukaitis, who will co-chair alongside Prof. Maurizio Scarpa, President and Founder of the Brains for Brain Foundation and coordinator of the European Reference Network for Metabolic Disorders (MetabERN).

Join us for a multi-stakeholder dialogue aimed at strategically positioning research and innovation within EU life science and health policy, using rare diseases as a model to highlight the EU’s added value. Key discussions will focus on:

  • Leveraging existing EU research infrastructure
  • Fostering an innovation ecosystem
  • Shaping effective policies to accelerate progress in rare disease research and treatment

Confirmed Speakers:

  • Olivér Várhelyi, European Commissioner for Health and Animal Welfare
  • Donata Meroni, Head of Unit, Health Monitoring and Cooperation, DG SANTE
  • Arjon van Hengel, Deputy Head of Unit, Health Innovations and Ecosystems Unit, DG RESEARCH
  • Szymon Bielecki, Head of Sector, Research and Innovation, eHealth, Well-Being and Ageing Unit, DG CONNECT
  • Peter Arlett, Head of Data Analytics and Methods, European Medicines Agency (EMA)
  • Loizos Solomou, Research, Innovation and Space Policy Attaché, Permanent Representation of Cyprus to the EU
  • Alexander Natz, Secretary General, European Confederation of Pharmaceutical Entrepreneurs (EUCOPE)
  • Luca Sangiorgi, Coordinator of ERN on Rare Bone Disorders (ERN BOND)
  • Ruth Ladenstein, Coordinator, European Reference Network for Paediatric Oncology (ERN PaedCan)
  • Leire Solis, Senior Manager, IPOPI (International Patient Organisation for Primary Immunodeficiencies)

Event Endorsements

The event is proudly endorsed by:

  • European Business Summit
  • EUCOPE
  • International MPS and Related Diseases Network
  • IPOPI
  • Screen4Rare
  • Ultragenyx
  • Sanofi
  • Chiesi
  • Denali Therapeutics

REGISTRATION

If interested, please register through  this form by 24 April.

All registrations will be reviewed given the limited room capacity. Confirmed participants will be informed by email.

We hope you can join us in Brussels or participate online

For any questions or registration issues, please contact Davide Patteri at Burson: davide.patteri@bursonglobal.com.

We look forward to seeing you there!

Streaming Page

https://app.livecasts.eu/building-a-research-and-innovation-ecosystem-for-rare-diseases

 

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The fight against rare diseases requires a unified and strategic approach, leveraging the collective expertise of researchers, policymakers, industry leaders, and civil society. By fostering collaboration and innovation, we can build a sustainable ecosystem that ensures better diagnosis, treatment, and care for millions of individuals. Together, we can drive forward a European Health Union that truly delivers for those affected by rare diseases.