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


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