A huge thank you to everyone who contributed to the success of our event “Building a Research and Innovation Ecosystem for Rare Diseases

A huge thank you goes to everyone who contributed to the success of our event on April 29th, a significant hearing on “Building a Research and Innovation Ecosystem for Rare Diseases” , that took place in Brussels. This vital event was organized by the Brains for Brain Foundation and hosted by MEP Vytenis Andriukaitis, former EU Health Commissioner, who co-chaired the session alongside Prof. Maurizio Scarpa, President and Founder of the Brains for Brain Foundation and coordinator of the European Reference Network for Metabolic Disorders (MetabERN).

The hearing, which aligns with the EU4H-2024-PJ-03 Call under the EU4H Action Grants 2024 and forms part of the public consultation launched by the European Parliament’s Committee on Public Health (SANT), served as a multi-stakeholder dialogue aimed at strategically positioning research and innovation within EU life science and health policy.

We are particularly grateful for the participation of MEP Vytenis Andriukaitis – a real driving force that inspires us with his passion and energy – and Commissioner for Health and Animal Welfare Olivér Várhelyi, who helped us highlight the critical role of research and innovation to get rare disease patients the treatment they need.

We also thank the diverse group of speakers and attendees who contributed to the event’s success.

For those who missed our event, you can still watch the recording at this link

You will not want to miss the insights offered by our impressive line-up of speakers – moderated by the incredible Josep Figueras from the European Observatory on Health Systems and Policies:

 Ruth Ladenstein and Luca Sangiorgi, representing European Reference Networks along with our own Maurizio Scarpa

 Alexandre Natz from EUCOPE

 Lucia Mamede from IPOPI – International Patient Organisation for Primary Immunodeficiencies

 Peter Arlett from the European Medicines Agency

And representing the European Commission:

 Donata Meroni from DG SANTE

 Arjon van Hengel from DG RESEARCH

 Szymon Bielecki from DG CONNECT

We are incredibly proud of the work and dedication of our community. Seeing such an engaged crowd day now energises us to keep pushing forward in our mission to make a real difference for patients and to build a robust ecosystem, anchored in European Reference Networks, fostering cooperation between institutional, public, private, and civil society stakeholders to make a real difference for patients.