Latest News

The workshop will foster international networking between participants and will present a forum to discuss ongoing research projects together with internationally recognized experts in basic science and immunology.

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In order to assess the usage of "unconventional treatment" for autoimmune hepatitis (AIH) in our ERN community, we would like to perform an online survey to collect the experiences with these new treatments in our patients. We define "unconventional treatment" as new agents that have not been defined as 2nd or 3rd line treatment for AIH in the past and are used more in the fields of dermatology, rheumatology or inflammatory bowel disease.

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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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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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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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