The conference aimed to shape a European policy framework for rare diseases, integrating strategies in research, digital technologies, healthcare, and social protection. This framework is designed to complement existing legislation and drive new initiatives at both European and national levels. A key focus was the European Economic and Social Committee’s (EESC) exploratory opinion, Leaving No One Behind: European Commitment to Tackling Rare Diseases, which calls on the European Commission to adopt a European action plan for rare diseases for 2025-2029. This action plan aims to ensure that patients with rare diseases are diagnosed within a year of symptom onset.
The Hungarian Presidency and the EESC urged the new European Commission and EU Member States to propose and implement a comprehensive European action plan with clear, measurable objectives to improve rare disease treatments and foster European collaboration. The conference’s main recommendations, alongside the EESC’s conclusions, were presented to the EPSCO Council on 3 December 2024.
Bringing together stakeholders from civil society, patient associations, healthcare professionals, researchers, and European institutions, the event highlighted ongoing political commitment and collaboration that has been evolving since 2004.
Read the conclusions and recommandations here.