ERN RARE-LIVER

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

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ERN RARE-LIVER Transition of healthcare template

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.

ERN Transition of healthcare template Read More

ePAG Lead/Board Representatives Meeting in Paris 2024

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.

ePAG Lead/Board Representatives Meeting in Paris 2024 Read More

ERN RARE-LIVER Study - Survey for people with PSC, PBC or AIH

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.

ERN RARE-LIVER Study - Survey for people with PSC, PBC or AIH Read More

ERN RARE-LIVER Members' Meeting 23 + 24 January 2025

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).

ERN RARE-LIVER Members' Meeting 23 + 24 January 2025 Read More

Ocaliva for PBC - FDA Advisory Panel Voting, 13 September 2024

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.

Ocaliva for PBC - FDA Advisory Panel Voting, 13 September 2024 Read More

EASL Academy 2025

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.

ERN RARE-LIVER EASL ACADEMY 2025 Read More

Veselina has had AIH since the age of three

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

Veselina has had AIH since the age of three - this is how the right treatment changed her life Read More

Tips how to take medication regularly

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.

Reasons why to take medication regularly Read More

ERN RARE-LIVER Patient Representative at the EASL Congress 2024

Our patient representative Frank shares his impressions.

ERN RARE-LIVER Patient Representative at the EASL Congress 2024 Read More

Scientific News

More Scientific News

ERN Paper in Gastroenterology - Longitudinal Evaluation of Individuals With Severe AATD

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.

Longitudinal Evaluation of Individuals With Severe Alpha-1 Antitrypsin Deficiency (Pi∗ZZ Genotype) - New ERN Paper in Gastroenterology Read More

ERN RARE-LIVER/EASL Position Paper on Rare primary liver cancers

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.

ERN RARE-LIVER/EASL Position Paper on Rare primary liver cancers Read More

New ERN RARE-LIVER Paper on PSVD - Journal of Hepatology

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.

New ERN RARE-LIVER Paper on PSVD - Journal of Hepatology Read More

For Physicians: New ERN RARE-LIVER Survey on Alcohol Use

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.

For Physicians: New ERN RARE-LIVER Survey on Alcohol Use Read More

Open letter to the European Commision

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

Open letter to the European Commision Read More

COST ACTION EURO-VALDI-NET accepted

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.

COST ACTION EURO-VALDI-NET accepted Read More

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