ERN RARE-LIVER

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

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ERN RARE-LIVER call for proposals for workshops in 2025 is now open

The ERN RARE-LIVER plans to fund workshops of disease working groups and other initiatives in 2025.

ERN RARE-LIVER call for workshops in 2025 is now open Read More

OCALIVA Withdrawal - ERN RARE-LIVER Statement

On 28 June 2024, the European Medicines Agency (EMA) recommended revoking Ocaliva’s marketing authorization, citing that its risks outweigh the benefits.

Communication to our Primary Biliary Cholangitis (PBC) patients – especially those receiving treatment with Ocaliva 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.

rex-ahoi-news-item://222 Read More

Scientific News

More Scientific News

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

New CPSS Position Paper

Congenital portosystemic shunts are often associated with systemic complications, the most challenging of which are liver nodules, pulmonary hypertension, endocrine abnormalities, and neurocognitive dysfunction.

New CPSS Position Paper Read More

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