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European Conference “For an EU commitment to tackling rare diseases”

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A conference organised by the European Economic and Social Committee (EESC) called “For an EU commitment to tackling rare diseases” took place on 29th November in Budapest, gathering different European stakeholders.

Luca Sangiorgi, ERN BOND Coordinator & Chair of the ERN Coordinators Group, shared ERN success stories during a session on a European action plan by 2030. He also presented the common ERN website on Ukraine launched by ERN-EYE: erncare4ua.com

Hélène Dollfus, ERN-EYE coordinator, presented the ERN registries and the CPMS, describing the main lessons learned by the ERNs over the years in view of and during a session on European Health Data Spaces.