This event brings together European and national policymakers, patient leaders, researchers, clinicians, regulators, industry and innovators to explore how research and innovation can become the standard of care for everyone living with a rare disease, strengthen Europe's leadership in life sciences and ensure that scientific breakthroughs translate into real improvements in people's lives.
Across the day, we will examine:
🔹 The Biotech Act and Europe's innovation ecosystem
🔹 Embedding research and innovation as the standard of care through meaningful patient partnership
🔹 The European Blueprint for Rare Diseases and the case for an EU Action Plan
More than 30 million people across Europe live with a rare disease. Behind every diagnosis is an individual, a family and a community whose future depends on faster diagnosis, better care, meaningful research and equitable access to innovation. Participants will explore how lived experience can shape policy, accelerate innovation, drive European competitiveness and improve outcomes for people living with rare diseases.
We will build one argument: in rare diseases, the human case and the competitiveness case are aligned - a Europe that embraces innovation will drive both health and economic benefits for its citizens.
View the draft programme
More information about the conference can be found at website
