Ministerial Conference “Care and Innovation Pathways for an EU Policy on Rare Diseases”

On 28th February 2022, EU Health Ministers and Stella Kyriakides, European Commissioner for Health and Food Safety, mobilised in Paris at the Ministerial Conference “Care and Innovation Pathways for an EU Policy on Rare Diseases”, organised by the French Presidency of the European Union. 

This conference was an opportunity to present the concrete progresses made in the field of care and research through cooperation on a European scale: the rise of the 24 European Reference Networks (ERNs), the reinforcement of a rare disease research policy with the European Joint Programme on Rare Diseases (EJP-RD), the deployment of Orphanet, the gradual establishment of the European Health Data Space and the development of biotechnology companies. Tribute was paid to the commitment of patients, families and patient organisations.

Pr Hélène Dollfus, coordinator of ERN-EYE and chair of all ERNs, presented the “Integrated and person centred care, access to healthcare and patient partnership”.