A Conference on Rare Diseases and the European Reference Networks was held on 10-11 October 2023 in the beautiful city of Bilbao (ES). ERN eUROGEN was honoured to participate in this significant event that involved around 550 participants, including clinicians, researchers, patients, politicians, and other stakeholders, who discussed important issues about rare diseases and European reference networks.
The conclusions of the conference are now available on the on the event’s webpage, where you will also find reports, photos, presentations, recordings and press articles.
The event was organised under the auspices of the Spanish Presidency of the EU Council in collaboration with the authorities of the Basque Country and played host to 50 high-level speakers, including Juan Mari Aburto, Mayor of Bilbao; Stella Kyriakides, EU Commissioner for Health and Food Safety; Sandra Gallina, Director General for Health and Food Safety, European Commission; Gotzone Sagardui, Minister of Health of the Basque Government; Oliver Röpke, President of the European Economic and Social Committee and José Manuel Miñones Conde, Minister for Health of Spain.
Rare diseases are chronic conditions that can sometimes be disabling or life-threatening. Approximately 7,000 rare diseases have been identified, affecting approximately 36 million people, which is 8% of the EU population. Around 80% of rare diseases are genetic, with 70% of them beginning in childhood, and unfortunately, up to 95% of rare diseases have no specific treatment or cure. The complexity of these diseases and the scarcity of data and knowledge make it difficult for patients, family members, and healthcare professionals to receive timely diagnosis, appropriate health and social care, and any available treatment.
The EU’s support for policy developments and research in rare diseases has been extensive for over 25 years. However, a European strategy to address rare diseases is required, as no Member State can succeed alone.
At the conference, Stella Kyriakides, European Commissioner for Health and Food Safety, emphasised the importance of the 24 European Reference Networks (ERNs), an important milestone in European cooperation between health systems, bringing together some of the EU’s best professionals and facilitating diagnosis, treatment, knowledge generation, and research for European patients with rare diseases.
Various ERN coordinators expressed their perspectives on the networks’ present and future roles. Alexis Arzimanoglou, the coordinator of ERN EpiCARE, and Holm Graessner, the coordinator of ERN-RND, emphasised the importance of improved training and involvement of clinicians in rare diseases. They also underscored the necessity to enhance the networks’ capabilities for research.
Supporting the ERNs’ continued development is crucial to foster genuine solidarity within the rare disease community. With a €77 million call for direct grants and an upcoming action with Member States worth over €18 million, the EC is continuing its commitments to support European patients and families affected by rare diseases and the need to ensure integration and sustainability of the European Reference Networks into national health systems.
At the conference, the European Economic and Social Committee (EESC) called upon the EU to launch a comprehensive European action plan considering the needs of all people living with rare diseases and focusing on strengthening cooperation between national health systems to provide better diagnoses, treatment, and care, and give patients access to the most advanced knowledge and treatment wherever they are in the EU.
The ERNs, Member States and civil society alike are eager to see progress in this field, and this conference was a step in the right direction.
