Following the High-Level Meeting on Rare Diseases (HLM Rare 2025) held in Brussels on 9–11 December 2025, which we previously reported, it has become clear that this was not a standalone event, but the starting point of a more sustained, coordinated campaign on rare diseases at the European level.
The timeline shown highlights key political, policy, and scientific milestones in 2026, during which rare diseases will be firmly on the agenda. These include major EU-level meetings, international conferences, policy briefings, and the continuation of the EU Innovation Lab: From Rare Diseases to a European Health Union Ecosystem, culminating in further high-level discussions later in the year.
Together, these milestones demonstrate how HLM-RARE is helping to maintain momentum throughout 2026, ensuring continued engagement with EU institutions, Member States, and key stakeholders, and reinforcing the role of European Reference Networks in shaping policy, research, and care for people living with rare and complex diseases.
