Latest News

This *ERN RARE-LIVER Webinar* on *12.12.2023* at *5pm* will give update to the Alpha-1 antitrypsin deficiency. One presentation will cover"siRNA therapy in hepatology: a1-AT deficiency".

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What was going on in the various Working Groups of ERN RARE-LIVER in the last months? At this year's Members' Meeting in Hamburg, most of the working groups gave a brief overview of their activities and what they had achieved in the past 12 months.

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Autumn starts with new virus variants and a new vaccine - what do patients with rare liver diseases need to bear in mind?

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The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks.

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Biliary Atresia (BA) is a rare paediatric liver disease with an estimated prevalence of 1 / 14.000-21.000 births in Europe (~ 270 cases / year). Its aetiology is still unknown but recent studies favour an aetiology through microbe- or toxin-triggered immune dysregulation in liver and bile ducts leading to obliteration and fibrosis.

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The INTERNATIONAL EXPLORATORY WORKSHOP supported by ERN RARE-LIVER, the Vascular Liver Diseases (VLD) Working group and VALDIG was an excellent opportunity to discuss and expand the possibilities of joint collaboration.

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Aida Regi from Spain was diagnosed with Wilson’s disease with neurological symptoms at the age of 13 and now has

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We had the last WG meeting within ESPGHAN Wednesday with a fully occupied room. We will have a new structure

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Carmen Teemer from Engstingen in Germany is our second new Patient Representativ. Working as a speech therapist, she

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A workshop organised by the ERN RARE-LIVER Transition of Care working group, funded by the Networking Support Scheme of the European Joint Programme on Rare Diseases.

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