HLM Rare 2025 marked a defining moment for the rare and complex disease community in Europe. Convening policymakers, EU institutions, researchers, clinicians, industry leaders, and patient representatives, the meeting elevated rare diseases to the forefront of the European health and research agenda.
Over three days of high-level dialogue and strategic exchange, participants aligned around a shared objective: to build a stronger, more integrated European Innovation and Care Ecosystem capable of accelerating research, improving diagnosis, expanding access to therapies, and strengthening specialised care across Member States.
HLM Rare 2025 was not conceived as a one-off event, but as a catalyst for long-term transformation. It laid the foundations for a mission-driven approach that moves beyond dialogue toward coordinated implementation and measurable impact for people living with rare and complex diseases across Europe.
The discussions were structured around key priorities:
RESEARCH & INNOVATION
EU INFRASTRUCTURE & SKILLS
POLICY & FUNDING
The conference was sponsored by:
The Steering Committee:
European Reference Networks (ERNs)
Non-governmental organisations
Industry
Other endorsing organisations:
Partners
Media Partner
Public Affairs and Communications Partner
