News
More NewsEMBO 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.
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.
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.
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.
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 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!
Scientific News
More Scientific NewsERN 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.
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.
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.
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.
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.
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.