The conference on Rare diseases and European reference networks will be organised under the auspices of the Spanish Presidency of the EU Council and in cooperation with the authorities of the Basque Country. It will take place on 10-11 October 2023 in the Euskalduna Conference Centre in Bilbao, Spain, starting with a side event on ALS on 10 October p.m.
Approximately 7 000 rare diseases have been described, affecting 8% of the EU population (up to 36 million people). They severely undermine people’s health and quality of life and up to 95% of them have no specific treatment or cure options.
At EU level, the 24 European Reference Networks (ERNs) are an important milestone in European cooperation between health systems. They bring together some of the EU’s best professionals, facilitating diagnosis, treatment, knowledge generation and research for European patients with rare diseases.
The EESC has been calling for a comprehensive European approach that takes into account all the needs of people living with rare diseases.
The conference will review the state of play and address some of the main challenges facing the EU policy framework on rare diseases and European Reference Networks. Member States and civil society alike are keen to see progress in this field: accordingly, the conference will respond to calls for action from the Czech Presidency of the Council and to the previous political priority of the Trio, as well as to calls from patients’ associations very active on the ground.