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The ERN RARE-LIVER survey on dietary habits of individuals living with PSC and IBD was open until 8 June and is now closed. Updates will be shared once results are available. Thank you to everyone who contributed — each response helps advance knowledge in this important area.

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 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 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!

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.

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.

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.

Key insights from the ERN RARE-LIVER workshop on healthcare transition, focused on improving the transfer from paediatric to adult care.

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.