09/12/2025
It's today! Live stream: https://www.brains4brain.eu/eu-activities-polices/hlm-rare/live-streaming/
Join us for this "High Level Meeting on a European Innovation and Care Ecosystem for Rare and Complex Diseases" on December 9-12, 2025!
The event will gather key stakeholders, including EU policymakers, industry leaders, patient advocacy groups, researchers, and healthcare providers. Its goal is to identify concrete actions and incentives to enhance innovation across the rare disease ecosystem.
📅 Day 1:
Fostering competitive excellence in science and innovation through support for fundamental research, clinical trials, and translational research.
📅 Day 2:
Building pan-EU infrastructure to strengthen European Reference Networks and enhance capacity, including newborn screening and the use of data and AI to expedite diagnosis and treatment initiation.
📅 Day 3:
Overcoming fragmentation by establishing a coherent policy and funding regulatory framework specific to rare diseases, highlighting the importance of cross-border care.
A key objective of the HLM will be to advocate for the EU’s adoption of a European Declaration on Rare Diseases.
Our coordinator Holm Graessner is participating in two panels on Day 1:
- Fostering EU Leadership in Clinical Trials for Rare Diseases (12:45-14:00 CET)
- Creating Comprehensive Rare Disease Infrastructure Clusters for Research, Innovation and Care (15:10-16:25 CET)
He is also moderating the panel "Ringfencing EU Funding for ERNs and Translational Research" (16:55-18:00). The ERN EpiCARE - Rare and Complex Epilepsies, MetabERN, ERN BOND - European Reference Network on Rare Bone Diseases and ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) will also be participating.
More information and registration here: https://www.brains4brain.eu/eu-activities-polices/hlm-rare/
