Meeting of the Named Patient Representatives

The last meeting of the Patient Representatives took place on 19 February 2024.

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It was our first meeting of the year, with positive good news. We had the opportunity to welcome new members, we initiated a new cycle of 4 years of ERN RARE-LIVER after being successfully evaluated.

Our agenda:
- Introduction of all participants
- Presentation of ERN organisation and plans; our accomplishments and directions, roles and missions 
- EURORDIS new team and organisation presented by Matt Johnson