Save the date! High-Level Meeting on Rare Diseases Research and Innovation in Europe, 9–11 December 2025
Register now for in-person or remote attendance
Register now for the upcoming High-Level Meeting (HLM) on a European research and innovation ecosystem for rare diseases, taking place on December 9-11, 2025, in Brussels.
A key objective of the HLM will be to advocate for the EU's adoption of a European Declaration on Rare Diseases. This formal commitment aims to create a sustainable Research and Innovation Ecosystem for rare diseases, ensuring ongoing dialogue and collaboration among all relevant stakeholders.
ERN-EuroBloodNet will proudly take part in the panel discussions, represented by María del Mar Mañú Pereira, our Scientific Coordinator. She will moderate Day 2, focused on EU Infrastructure & Skills: "Building pan-EU infrastructure to strengthen European Reference Networks and enhance capacity, including newborn screening and the use of data, registries and AI to expedite diagnosis and treatment initiation."
The agenda of the three-day programme will focus on the following key topics:
Day 1: Research & Innovation
Fostering competitive excellence in science and innovation through support for clinical trials and translational research.
Day 2: EU Infrastructure & Skills
Building pan-EU infrastructure to strengthen European Reference Networks and enhance capacity, including newborn screening and the use of data, registries and AI to expedite diagnosis and treatment initiation.
Day 3: Policy & Funding
Overcoming fragmentation by establishing a coherent policy and funding regulatory framework specific to rare diseases, highlighting the importance of cross-border care.
Register now for in-person or remote attendance. Let's shape the future of rare disease research together!