Explore our network

Please watch our new video describing Veselinas path and experience with the right treatment of her diagnosis.

We are pleased to announce an Open Call for all ERN RARE-LIVER members to propose a fellow within their institution to be part of the ERN RARE-LIVER CPMS Helpdesk team. The aim is to include three different young fellows from three different member centres, and to have both paediatric and adult representation.

The ERN RARE-LIVER plans to fund workshops of disease working groups and other initiatives in 2025.

JARDIN is a Joint Action (JA) created to achieve the integration of European Reference Networks (ERNs) into National Healthcare Systems.

Save the date for our Members’ Meeting in Barcelona on 23 + 24 January 2025.

On 28 June 2024, the European Medicines Agency (EMA) recommended revoking Ocaliva’s marketing authorization, citing that its risks outweigh the benefits.

These tips are a team effort by Aida Regi Cosculluela and Dr Wiebke Papenthin,
named patient representatives of the ERN RARE-LIVER Wilson working group and the ERN Youth Panel.

ERN RARE-LIVER has constructed the survey “Counselling Young Adults With Liver Disease On Alcohol Use”. The survey will be open until 8 September, 2024. It consists of max. 10 pages and it will take 10 to 15 minutes to respond.

The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks.

Congratulations to Pierre-Emmanuel Rautou and colleagues for their successful COST Action application! 134 researchers from 27 countries put together the EURO-VALDI-NET project on vascular liver diseases.