Transition: The journey from paediatric to adult care

The journey from paediatric to adult care takes place during adolescence. It is a complex process requiring a team effort from a variety of specialists.

ERN RARE-LIVER has a dedicated working group tackling this topic. We are very grateful to Deirdre Kelly and her coworkers for collaborating to produce this information video.

In February of 2023, a workshop was organised by the ERN RARE-LIVER Transition of Care working group, funded by the Networking Support Scheme of the European Joint Programme on Rare Diseases.

The workshop resulted in various inputs, priorities and actions. As a result, the group decided to prioritize practical actions. To reduce the number of actions, the group will be subdivided into three subgroups responsible for communication, organization, and education, respectively. Each subgroup will identify a maximum of three actions to tackle in 2023-2024.

Another outcome of this working group was a series of videos in which members of the new Youth Panel shared their stories with other patients and interested people.

Listen to the story of Lina from Germany:

This is the story of Malou from Denmark who is one of the leaders of the Youth Panel: