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On 28 June 2024, the European Medicines Agency (EMA) recommended revoking Ocaliva's marketing authorization, citing that its risks outweigh the benefits. The European Reference Network for Hepatological Diseases, ERN RARE-LIVER, acknowledges these worries and wants to send this message to patients and their doctors. We want to put this recommendation into perspective, we want to reassure patien...

In February 2023, 15 young adults, all suffering from different but rare liver diseases, met at an ERN RARE-LIVER Transition Workshop in Ghent, Belgium. Together they founded the first cross ERN Youth Panel. Their goal: to make their situation clear and to bring their unmet needs to the public. To give our members a platform, we will be releasing new videos in the coming weeks. Subscribe to our...

ERN RARE-LIVER has established a multicentre European patient registry called R-Liver. The registry addresses a major issue with rare liver diseases which is the lack of data and the fact that data are fragmented and scattered across different countries. This new video not only introduces the registry and its benefits, it also explains to patients how it works and what advantages their particip...

In February 2023, 15 young adults, all suffering from different but rare liver diseases, met at an ERN RARE-LIVER Transition Workshop in Ghent, Belgium. Together they founded the first cross ERN Youth Panel. Their goal: to make their situation clear and to bring their unmet needs to the public. To give our members a platform, we will be releasing new videos in the coming weeks. Subscribe to our...

In February 2023, 15 young adults, all suffering from different but rare liver diseases, met at an ERN RARE-LIVER Transition Workshop in Ghent, Belgium. Together they founded the first cross ERN Youth Panel. Their goal: to make their situation clear and to bring their unmet needs to the public. To give our members a platform, we will be releasing new videos in the coming weeks. Subscribe to our...

At the annual Members' Meeting of the ERN RARE-LIVER Community 2023 in Hamburg, Germany almost all working groups gave a brief overview of current activities, achieved aims, future plans and changes in staff or structure. If you are a member of ERN RARE-LIVER and you are interested in joining one of our working groups please contact the ERN Office: ERN.RareLiver@uke.de.

At the annual Members' Meeting of the ERN RARE-LIVER Community 2023 in Hamburg, Germany almost all working groups gave a brief overview of current activities, achieved aims, future plans and changes in staff or structure. If you are a member of ERN RARE-LIVER and you are interested in joining one of our working groups please contact the ERN Office: ERN.RareLiver@uke.de.

At the annual Members' Meeting of the ERN RARE-LIVER Community 2023 in Hamburg, Germany almost all working groups gave a brief overview of current activities, achieved aims, future plans and changes in staff or structure. If you are a member of ERN RARE-LIVER and you are interested in joining one of our working groups please contact the ERN Office: ERN.RareLiver@uke.de.

At the annual Members' Meeting of the ERN RARE-LIVER Community 2023 in Hamburg, Germany almost all working groups gave a brief overview of current activities, achieved aims, future plans and changes in staff or structure. If you are a member of ERN RARE-LIVER and you are interested in joining one of our working groups please contact the ERN Office: ERN.RareLiver@uke.de.

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. A pan-European registry collecting data on incidence, diagnostic features and both standard and novel treatments of BA was needed to improve the quality of care. To me...

Autumn starts with new virus variants and a new vaccine - what do patients with rare liver diseases need to bear in mind? Prof. Dr. Ansgar W. Lohse Network Coordinator of ERN Rare-Liver has some answers...

In February 2023, 15 young adults, all suffering from different but rare liver diseases, met at an ERN RARE-LIVER Transition Workshop in Ghent, Belgium. Together they founded the first cross ERN Youth Panel. Their goal: to make their situation clear and to bring their unmet needs to the public. To give our members a platform, we will be releasing new videos in the coming weeks. Subscribe to our...

In February 2023, 15 young adults, all suffering from different but rare liver diseases, met at an ERN RARE-LIVER Transition Workshop in Ghent, Belgium. Together they founded the first cross ERN Youth Panel. Their goal: to make their situation clear and to bring their unmet needs to the public. To give our members a platform, we will be releasing new videos in the coming weeks. Subscribe to our...

Vortrag im Rahmen des Arzt-Patienten-Seminars am 04.02.2023.

"PBC - Leberwerte gut, alles gut?" | Dr. Hartl & Dr. Uhlenbusch | APS 2023

"Wie bereite ich mich auf meinen Arztbesuch richtig vor?" | Dr. Schregel | APS 2023

"Grundlagenforschung der Leber: warum spenden Sie Ihr Blut (...) ?" | Prof. Herkel | APS 2023

"Sport und Bewegung:der Schlüssel zur Gesundheit?" | Dr. Schillings | APS 2023

"Auch mit Leberzirrhose kann man 100 Jahre alt werden" | Dr. Sebode | APS 2023

Begrüßung und "Was wir durch und über Corona gelernt haben" | Prof. Lohse | APS 2023

"AIH - Alles rund um die Therapie" | Fr. Fellinghauer & Dr. Steinmann | APS 2023

CPMS - getting started

Clinical Patient Management System (CPMS) - enrolling and removing patients

ERN RARE-LIVER Members' Meeting 2022 in Hamburg

Latest Covid update on the general pandemic situation and the impact on rare liver disease patients

Workshop PSC | Primär Sklerosierende Cholangitis und Darmerkrankungen - F. Glaser Vortrag 2022

Workshop AIH | Wenn Tabletten mehr schaden als helfen? - J. Hartl Vortrag 2022

Workshop PBC | Symptome der PBC - C. Weiler-Normann Vortrag 2022

Workshop PBC | Klinische Studien: Was gibt es Neues - S. Steinmann Vortrag 2022