ERN RARE-LIVER

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

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EMBO Workshop on Liver and pancreas in metabolic disease: from pathways to therapies

This meeting will bring together leading researchers and experts on cutting-edge advances in liver and pancreas biology. It will discuss progress in our understanding of biological mechanisms underlying human metabolic diseases, as well as development of novel therapeutic strategies.

EMBO Workshop on Liver and pancreas in metabolic disease: from pathways to therapies Read More

Talk to Heal - Session 1: Learn about AIH at the Paediatric Hospital of Coimbra

The Hepaturix Association in Portugal is currently developing a new project and is organising several events as part of this in 2025. In addition to the Hepaturix Association, the Paediatric Hospital of Coimbra and members of our ERN RARE-LIVER Youth Panel are involved as well.

Talk to Heal - Session 1: Learn about AIH at the Paediatric Hospital of Coimbra Read More

Barriers to sexual function in patients with liver disease/LTX- Survey for Physicians

Thank you for taking the time to read about this research study exploring the “Barriers to sexual function assessment in patients with liver disease and liver transplantation by healthcare professionals”. It was created as part of research on the above topic at Kings College Hospital, London, UK.

Barriers to sexual function in patients with liver disease and Ltx - Survey for Physicians Read More

Dietary habits of individuals living with PSC - ERN RARE-LIVER Survey for Patients

This research is designed to explore how individuals adapt their diets due to PSC, and if applicable, due to underlying Inflammatory Bowel Disease (IBD). Additionally, we seek to identify the primary sources of information individuals with PSC rely on for dietary advice.

Dietary habits of individuals living with PSC - ERN RARE-LIVER Survey for Patients Read More

ERN RARE-LIVER Wilson Disease and Pregnancy Survey - for Physicians

Please collaborate with the European ERN RARE-LIVER Wilson Group by answering this anonymous survey on pregnancy and contraception for Wilson Disease Women. Thank you for your collaboration!

ERN RARE-LIVER Wilson Disease and Pregnancy Survey - for Physicians Read More

ERN RARE-LIVER Wilson Disease and Pregnancy Survey - for Patients

Please collaborate with the European ERN RARE-LIVER Wilson Group by answering this anonymous survey on pregnancy and contraception for Wilson Disease Women.
Thank you for your collaboration!

ERN RARE-LIVER Wilson Disease and Pregnancy Survey - for Patients 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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