Transition of care for patients with rare liver disease throughout Europe: bridging the gap

  • 17 mars 2023 - 08:30
  • Ghent, Belgium

A workshop organized by the ERN Rare Liver Transition of Care working group, funded by the Networking Support Scheme of the European Joint Programme on Rare Diseases.

Face-to-face networking event, bringing all stakeholders together, that will result in a plan of action to improve age-appropriate and transitional care in patients with rare liver disease throughout Europe. Starting from “a best model of practice” but taking into account the gaps and barriers identified by a previous survey, we aim to define the minimal but absolute requirements for transitional care.

Contact and registration
If you are interested, please send your contact details and a short motivation letter to before November 15th, 2022

Travel policy and funding
A maximum of 300 euro will be covered for travel in addition to accommodation for 1 night (for patient representatives 2 nights). There will also be catering and a social programme.

Organizing Committee
ERN Rare Liver Transition of Care working group

To ensure a broader view of the different transition practices and challenges in Europe, we have set up an online survey for health care providers and we would very much appreciate if you could take the time to contribute (5-10 minutes). We would be grateful if the survey could be completed by as many hepatology centers within Europe, both adult and pediatric and encourage one separate input per adult and pediatric center.

The collection of these data will provide important information for the workshop and can serve as a starting point for common European transition best practice recommendations. You can access the survey via the link:

The survey will be online until October 15th.

More information here.


  • Start Date:17 mars 2023
  • Start Time:08:30
  • End Date:18 mars 2023
  • End Time:13:30
  • Location:Ghent, Belgium