ERN RARE-LIVER Patient Representatives at the Members Meeting in Barcelona

Our Members´ Meeting in Barcelona was attended by 3 members of the ERN RARE-LIVER Patient Representatives (ePAG) Lead Team as well as two other patient representatives. In addition to contributions in the plenary session (Wiebke Papenthin (Morbus Wilson e.V., Patient Representative Lead)) and in the meetings of the Disease Working Groups, our ePAGs Gema Iribar (ALBI Spain) and Aida Regi Cosculluela (AEFE de Wilson) provided information on projects from their patient organisations and shared their insights.
Gema brought along a poster and dissemination material aimed at explaining AIH to children in an age-appropriate way. Please have a look at this poster below – if there are any questions, please get in touch and we will connect you to Gema.

Aida has made a video available for the Members´ Meeting that was created by AEFE de Wilson in February 2024. This video provides information about Wilson Disease in a moving and accessible way. Please have a look at the video below. The video is in Spanish, but subtitled.

The participation of our ePAGs is very important and an essential part of ERN RARE-LIVER. We are all the more important and grateful to have had these 5 patient representatives with us in Barcelona.