ERN ReCONNET Participates in High-Level Meeting on Rare Diseases

From 9 to 11 December 2025, ERN ReCONNET took part in the High-Level Meeting on Rare Diseases, a three-day event dedicated to strengthening Europe’s capacity for research and innovation in rare diseases and to consolidating the strategic contribution of the European Reference Networks (ERNs).

The final day of the meeting was hosted at the European Parliament in Brussels, providing a unique opportunity to bring the discussion directly into the EU’s institutional setting.

The meeting gathered key stakeholders — EU policymakers, industry leaders, the 24 European Reference Networks, patient organisations, researchers, and healthcare providers, serving as a platform to identify concrete actions and incentives to foster innovation across the entire rare disease ecosystem.

ERN ReCONNET was represented by a delegation of the Coordination Team:
• Prof. Marta Mosca, ERN ReCONNET Coordinator
• Dr. Rosaria Talarico, Scientific Coordinator
• Dr. Diana Marinello, Network Manager

Throughout the meeting, the team contributed to discussions on how ERNs can accelerate knowledge generation, strengthen collaborative research, and support capacity building across Europe.

Prof. Mosca spoke during the session on developing specialised skills and formalising the ERN Academy, presenting the ERNs’ work to support a robust and coherent European framework for advanced training in rare diseases.

A highlight of the meeting was the presentation of the European Declaration on Rare Diseases, calling for renewed and coordinated action to reinforce research, innovation, and equitable access to expertise. The Declaration represents a collective commitment by European stakeholders to strengthen long-term strategies for people living with rare conditions.

More information about the event is available on the official High-Level Meeting on Rare Diseases website: click here