News
More NewsERN RARE-LIVER is now on Instagram!
We’re excited to announce that ERN RARE-LIVER has officially launched its Instagram account! Follow us for the latest updates, insights, and behind-the-scenes content from the world of rare liver diseases.
ERN RARE-LIVER at the EASL Congress 2025 in Amsterdam
ERN RARE-LIVER will be present at the EASL Congress 2025, taking place from 7–10 May in Amsterdam – and we’re excited to connect with you there!
ERN RARE-LIVER at the ESPGHAN Congress 2025 in Helsinki
ERN RARE-LIVER will be present at ESPGHAN 2025, taking place from 14–17 May at Messuaukio 1, 00520 Helsinki – and we look forward to connecting with you there!
CPMS 2.0: Key Updates and Important Access Information
The new CPMS (Clinical Patient Management System) 2.0 is now fully available, offering new features and improvements to enhance the user experience. ERN RARE-LIVER will also be launching the CPMS Live Case Discussion Series, starting in June 2025.
Talk to Heal - Session 2: Learn about Alpha-1 deficiency 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.
ERN RARE-LIVER Workshops in 2026 - Open application process
The ERN RARE-LIVER plans to fund workshops of disease working groups and other initiatives in 2026. We want to especially encourage disease working groups to engage their members through structured workshops and meetings aimed at collaboration and discussion.
Scientific News
More Scientific NewsNew EASL-ERN Clinical Practice Guidelines on Wilson disease
We are happy to release the updated Wilson disease guideline which is the results of EASL-ERN RARE-LIVER collaborative work with endorsement of ESPGHAN. The value of the guideline is methodology which strictly followed EASL guidelines how to write guidelines. The update introduced several novelties.
Paediatric to Adult Care Transfer in Rare Liver Diseases
Key insights from the ERN RARE-LIVER workshop on healthcare transition, focused on improving the transfer from paediatric to adult care.
New ERN RARE-LIVER Paper on PSVD
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.