ERN RARE-LIVER

Our mission is to improve the care of rare liver disease patients throughout Europe

Latest Covid update on the general pandemic situation and the impact on rare liver disease patients

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General Covid update and the impact on rare liver disease patients

Both the covid pandemic and the prospect of new vaccines have changed the general situation significantly in recent weeks. For patients with rare liver diseases, the situation is much more complicated and the questions even more specific.


Online Members' Meeting: 02 February 2023, 18:00-20:00 (CET)

We invite all our members and partners to a big online meeting. We will hear news from the working groups and show our plans for 2023.

After the meeting,

Clinical exchange program – time for a review

The European Commission in cooperation with ECORYS, one of the oldest economic research and consulting companies in Europe, had launched a Clinical Exchange Program to share knowledge and stimulate collaborations between healthcare professionals within the ERNs.

Plasmapheresis Workshop, 22-23 November in Copenhagen

On 22 and 23 November, representatives from children’s hospitals in Spain, Germany, UK and Denmark met for a networking and working meeting at Rigshospitalet, where they jointly took the first step toward establishing a protocol for the treatment of children with acute liver failure in the five European centres involved.

Biliary Atresia Register planned for December 2022

Biliary Atresia (BA) is a rare liver disease of infancy with unclear etiology potentially leading to biliary cirrhosis and liver failure in early life. BA is still one of the main indications for paediatric liver transplantation. To meet this need, the prospective ERN RARE LIVER Biliary Atresia Registry (EBAR) was implemented in the up-and-running R-LIVER registry.


Scientific News