Conference of the Spanish Presidency calls for a European Action Plan for Rare Diseases
From 10-11 October 2023, a high-level conference was held under the auspices of the Spanish Presidency of the EU Council in Bilbao, Spain to discuss the current rare disease landscape in Europe, and to address challenges facing the EU policy framework on rare diseases and European Reference Networks. Organised by the European Economic and Social Committee (EESC) in partnership with the Health Department of the Basque Government, the conference was titled “How to guarantee European solidarity for patients?”.
The discussion was organised in response to last year’s call to action from the Czech Presidency, which included a call to adopt a European Action Plan for Rare Diseases and the need for sustainable investment to support the integration of ERNs into national health systems. Elaborating on these needs, the conference reinforced stakeholders’ commitment to pursuing these goals, and emphasised the importance of continuing to prioritise rare diseases on the European policy agenda. The political momentum generated in Bilbao, combined with support from the upcoming Belgian Presidency, will leave the rare disease community well-situated to continue working towards a European Plan following the upcoming European Parliament election in June 2024.
The conference featured a range of high-level speakers from the European Commission, European Reference Networks, and patient associations, among others. Opening remarks were delivered by Stella Kyriakides, European Commissioner for Health and Food Safety, who spoke about the importance of European solidarity for rare disease patients in building a robust European Health Union. Speakers such as Oliver Röpke, President of the EESC, and José Miñones Conde, Spanish Minister for Health, echoed this sentiment and underlined how people living with a rare disease are often overlooked.
Drawing attention to the importance of ERNs as the main infrastructure for highly-specialised rare disease care, several ERN coordinators shared their views on the current and future roles of the networks. Alexis Arzimanoglou, coordinator of the ERN EpiCARE, and Holm Graessner, coordinator of ERN-RND, spoke about the need for enhanced training and engagement of clinicians in rare diseases, as well as expanding the networks' capacities for research. The ERNs are central to the current rare disease landscape in Europe, and facilitating their further development and integration into national health systems is vital for achieving true solidarity for the rare disease community.
Dr Ana Rath addresses conference attendees
Orphanet Director Ana Rath also addressed the conference, speaking about the importance of interoperability in the health data and research landscapes, so as to seamlessly build a data ecosystem which is much needed in the rare disease field. She called attention to the potential of ORPHAcodes, the only medical terminology specific to rare diseases, for this purpose when implemented in registries and electronic health records.
Over the two days of the conference, the many impressive speakers left attendees with one clear message: there is a pressing need for action to support the rare disease community at the European level. Introducing a European Action Plan for Rare Diseases will facilitate the development of a more sustainable ERN infrastructure, the harmonisation of existing policies, and, ultimately, will guarantee solidarity for the 30 million Europeans living with a rare disease.
