From 9th to 11th October the project managers meeting and a conference on rare diseases and ERNs was held in Bilbao, Spain. The meeting consisted of the presentation of activities done by all the 24 ERNs. 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. High-level speakers from European Commission, Ministry of Health of Basque government and also Spain , EESC and Mayor of Bilbao attended the meeting on rare diseases. The conference aims at reviewing the state of play and to address some of the main challenges facing the EU policy framework on rare diseases and European Reference Networks. Member States and civil society alike were keen to see progress in this field: accordingly, the conference also aims to 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.
