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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AUTOIMMUNE LIVER DISEASE IN CHILDREN: EUROPEAN SURVEY ON THE AVAILABILITY OF AGE-SPECIFIC PEDIATRIC DRUG FORMULATIONS

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The ERN RARE-LIVER PSC Working Group has launched a survey for patients to understand the level of care and monitoring that people with PSC receive.

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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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In collaboration with our patient representatives, we have produced a lay summary of the position paper, published recently as a result of the collaboration between the European Reference Network on Hepatological Diseases (ERN RARE-LIVER) and the International Autoimmune Hepatitis Group.

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Dear Patients, During the Corona (SARS-CoV-2) pandemic, a lot of rare autoimmune liver disease patients are worried that

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