The Czech Presidency of the EU Council organised the Expert Conference on Rare Diseases in Prague on 25-26 October 2022 to explore how the European Union can take continued steps towards a coordinated strategy for rare diseases to better addresses current unmet needs by setting meaningful goals for patients, families and for society at large, integrated at the national and regional levels.
The 2nd Strategy Assembly of Coordinators and Project Managers of the 24 European Reference Networks for Rare and Complex Diseases, held in Lyon, France on Tuesday, November 22 nd , 2022, unanimously endorsed the “Call to Action” from the Expert Conference on Rare Diseases organized by the Czech Presidency of the EU Council in Prague (October 25th – 26th , 2022).