The Brains4Brain foundation recently announced an important initiative dedicated to tackling a major challenge in healthcare: creating a comprehensive ecosystem for rare diseases. To launch this initiative, the foundation is hosting a preparatory event designed to present its project to policymakers, including Members of the European Parliament (MEPs), European Commission representatives, and officials from Member States, alongside other stakeholders in the rare disease community. The hearing, titled “Building a Research and Innovation Ecosystem for Rare Diseases” will be held on Tuesday, 29 April, from 14.30 to 16.30 at the European Parliament.

This pivotal event is led by Vytenis Andriukaitis, MEP, in collaboration with the Brains4Brain Foundation and various stakeholders. It is part of a public consultation by the European Parliament’s Committee on Public Health (SANT).

The hearing will focus on future political and policy initiatives in the rare disease sector, emphasising the Research and Innovation Union concept outlined in Draghi’s Report, aiming to build a robust ecosystem, supported by European Reference Networks, to foster collaboration among institutional, public, private, and civil society stakeholders.

The key objectives include promoting scientific excellence, enhancing industrial competitiveness, and implementing targeted solutions for the 36 million Europeans living with rare diseases. Collaboration is vital to address the complex challenges faced by patients and healthcare providers, making this hearing a crucial platform for shaping future policies for rare diseases.

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.