Latest News

On behalf of the Transition Working group lead and members, João Madaleno, Isabel Goncalves, and Ruth De Bruyne, and as announced during the members’ meeting, ERN RARE-LIVER are forwarding you the request below. Please invest ten minutes of your time to complete the very important survey. The survey will be online until 15th October.

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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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WANTED: Your contributons!

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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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Patients living with rare liver diseases are strongly encouraged to get vaccinated against COVID-19! This includes patients with decompensated liver disease and any rare liver disease such as PBC, PSC, AIH, vascular liver diseases, patients waiting for liver transplant and patients post-transplant. The vaccines appear safe. Talk to your healthcare provider if you are worried or unsure.

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When a patient was presented to our Hepatology Department by the Maternity Clinic in Hamburg with an unusual cause of elevated ALP, opening a panel in CPMS allowed a case discussion which helped us to confirm the origin of the extremely high elevated ALP, and to estimate the risk to the mother and the unborn child. Continue for the full case report.

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