Programme

The primary policy objective of ECRD 2024 was to ensure that rare diseases remain a top priority for the upcoming European political leadership, as the Conference set a decisive platform to champion the integration of a comprehensive European Action Plan on rare diseases into the new EU legislative agenda, rooted in the recommendations of Rare 2030. Spanning a range of areas including early diagnosis, accessibility and affordability of treatments, social inclusion, research and innovation, national strategies and access to highly specialised care, such an Action Plan would encompass all policies and initiatives impacting people living with a rare disease at both European and national levels, establishing clear, measurable goals to be achieved by 2030.

2024 is a year of change for European institutions and for European citizens. ECRD took place at a consequential time, only 3 weeks before EU citizens place their votes to decide who should represent them for the next five years in the European Parliament. This is not only important for the Parliament itself, but also because the new European leadership of the European Commission, the new College of 27 Commissioners, will be approved by the newly elected Members of the European Parliament in early autumn. This newly appointed Commission will drive a proposal for a seven-year budget encompassing all of the spending priorities.

Altogether, this new leadership will steer the priorities of the EU until the end of the decade. We, the rare disease community, have high expectations from this new leadership, not least because they will bring to completion some important legislative files, such as the review of the pharmaceutical legislation. We also expect them to bring to fruition the recommendations of the Rare 2030 foresight study, a comprehensive review of the strategy for rare diseases, which the entire rare disease community has been involved in shaping.

As we know, European policies are also influenced by the priorities of member countries. ECRD took place during Belgium’s six-month tenure as the rotating president of the Council of the European Union. We are therefore excited to announce that this conference was organised under the auspices of the Belgian Presidency, reflecting its important role in steering the EU’s agenda during this period.