Latest News

A workshop organized 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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Biliary Atresia (BA) is a rare liver disease of infancy with unclear etiology potentially leading to biliary cirrhosis and liver failure in early life. BA is still one of the main indications for paediatric liver transplantation. To meet this need, the prospective ERN RARE LIVER Biliary Atresia Registry (EBAR) was implemented in the up-and-running R-LIVER registry.

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The European Commission in cooperation with ECORYS, one of the oldest economic research and consulting companies in Europe, had launched a Clinical Exchange Program to share knowledge and stimulate collaborations between healthcare professionals within the ERNs.

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On 22 and 23 November, representatives from children's hospitals in Spain, Germany, UK and Denmark met for a networking and working meeting at Rigshospitalet, where they jointly took the first step toward establishing a protocol for the treatment of children with acute liver failure in the five European centres involved.

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Unexplained cases of acute liver inflammation in children, especially in the United Kingdom (UK) were reported earlier this year. In response, the European Reference Network on Hepatological Diseases (ERN RARE-LIVER) conducted a thorough investigation that did not confirm the alarming observation from the UK in other European countries.

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We would like to draw your attention to the new EASL Clinical Practice Guideline on Sclerosing Cholangitis, which has been published in June 2022. We are grateful to all the authors and panelists, most of them from ERN centres.

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The advent of enhanced radiological imaging techniques has facilitated the diagnosis of cystic liver lesions and concomitantly, the evidence base supporting the management of these diseases has matured over the last decades.

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There has been concern regarding the frequency of unexplained cases of acute liver inflammation in children, especially in the United Kingdom (UK). In response, the European Reference Network on Hepatological Diseases (ERN RARE-LIVER) decided to conduct a thorough investigation. Conclusions from a survey conducted over 34 paediatric specialist liver centers from 22 European countries do not confirm the alarming observations from the UK in other European countries.

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In many countries booster vaccinations have become available, and therefore patients and families ask questions as to whether and when to receive a booster vaccine. As the evidence is scarce, and even more so in the field of rare diseases, it is not simple to give sound and scientifically based advice. Furthermore, availability of vaccines may differ. It remains a priority to vaccinate all unvaccinated at-risk people. Nonetheless, here we give some recommendations to the best of our knowledge as of November 2021:

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The second ERN RARE-LIVER Quality of Life (QoL) meeting began in Copenhagen on Friday 2 July. The meeting was held in a hybrid format with 11 on-site participants and additional online participants. The speakers were mainly from the Baltic Sea countries and we also welcomed participants from the United Kingdom and the Netherlands. There were both live and online talks on both days, followed by group discussions with the aim of capturing the most central issues raised and identifying potential future areas to elaborate upon, both clinically and scientifically. Many thanks to the organisers, Marianne Hørby, Henning Grønbæk and Henriette Ytting, and to all who participated.

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