The conference on Rare diseases and European reference networks was organised under the auspices of the Spanish Presidency of the EU Council and in cooperation with the authorities of the Basque Country. It took place on 11 October 2023 in the Euskalduna Conference Centre in Bilbao, Spain with the participation of the following high-level speakers:
- 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
- José Manuel Miñones Conde, Minister for Health of Spain
Rare diseases are conditions that are usually chronic and sometimes disabling or life-threatening. 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. Spain has played an important role in the development of a national policy framework for rare diseases and centres of expertise. At local level, the good practices developed in the Basque Country deserve to be shared.
The conference reviewed the state of play and addressed 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 responded 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.