ABOUT HLM RARE 2025
ABOUT HLM RARE 2025
Why this event matters
Drawing inspiration from the Draghi, Letta, and Heitor reports, the High-Level Meeting (HLM) will explore three central themes across the three days.
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
A central goal of the HLM Rare will be advocating for the EU’s adoption of a European Declaration on Rare and Complex Diseases, aiming to establish a sustainable Research and Innovation Ecosystem that ensures continuous dialogue and collaboration among all stakeholders.
Who should attend
POLICY-MAKERS & REGULATORS
Clinicians & researchers
Patient & advocates
Industry leaders
MEET THE ORGANISERS & STEERING COMMITTEE
A number of European Reference Networks, supporting organisations and industry leaders listed below are part of the steering committee that is helping shape the event programme and the European Declaration on rare diseases.
OUR FUNDING & SPONSORS
We are grateful to the organisations and partners who make this event possible. Their support helps us bring together the global and European rare disease community to share knowledge, drive innovation and improve the lives of people living with rare diseases.
