With the aim to stablish a concrete ecosystem for rare diseases, the Brains4Brain Foundation organised a preparatory event to present the project to selected policymakers – other MEPs and representatives from the European Commission and the Members States.
The hearing is designed to inform future political and policy activities in the rare disease space and will explore the piloting of the Research and Innovation Union concept, as outlined in Draghi’s Report, specifically tailored to meet the needs of individuals living with rare diseases. The objective is to establish a robust ecosystem, anchored in European Reference Networks, fostering collaboration between institutional, public, private, and civil society stakeholders.
Key Objectives:
- Promoting Scientific Excellence – Supporting fundamental research and attracting world-class talent in science and innovation.
- Enhancing Industrial Competitiveness – Strengthening partnerships between academia and industry to advance crucial technologies and strategic sectors.
- Implementing a Mission-Oriented Approach – Developing targeted solutions to improve the quality of life for the 36 million Europeans living with rare diseases (PLRD).