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This ERN RARE-LIVER template aims to improve the communication and information transfer from paediatric services to the adult department, facilitating a smoother transition of care for patients.

To discuss and reorganise the activities within the ERN RARE-LIVER ePAG group, those responsible leads met in Paris at the end of October. Many ideas were exchanged and concrete action steps were defined.

Social determinants of health (SDOH) are the conditions in which people are born, grow up, work and age. Studies suggest that SDOH influence the course of liver disease. However, this has not yet been studied in patients with autoimmune liver disease.

Save the date for our Members’ Meeting in Barcelona on 23 + 24 January 2025.
Participation is limited to two representatives per member centre, including affiliated partners. One of the participants can be funded per centre, according to EC regulations (EU unit costs).

On 13 September 2024, a meeting of the Gastrointestinal Drugs Advisory Committee took place at which supplemental New Drug Application (sNDA) 207999 S-011, for OCALIVA (obeticholic acid) was discussed. The meeting was open to the public and was streamed live on the official FDA YouTube channel.

The ERN RARE-LIVER EASL ACADEMY 2025 will be hosted by the university hospital of Heidelberg and will focus on rare liver diseases with special focus on translating clinical practice guidelines in real-life care.

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

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.

Our patient representative Frank shares his impressions.

Non-invasive liver fibrosis surrogates are superior to lung parameter for prediction of organ-related outcomes. Liver disease progresses primarily in those individuals with risk factors/signs of liver injury.

In this position paper, an international panel of experts representing oncology, hepatology, pathology, radiology, surgery, and molecular biology has summarised the available information and evidence on the pathogenesis, diagnosis, and treatment of rare PLCs.

Porto-sinusoidal vascular liver disorder (PSVD) is a rare liver condition that often leads to severe complications from portal hypertension and can reduce life expectancy.

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.