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ERN RARE-LIVER
Germany
Registrace 19. 08. 2020
The European Network on Hepatological Diseases (ERN RARE-LIVER) is one of 24 networks set up to improve research and patient care in the field of rare liver diseases.
For more on ERNs and cross-boarder healthcare:
rare-liver.eu/about/what-is-ern-rare-liver
For more on ERNs and cross-boarder healthcare:
rare-liver.eu/about/what-is-ern-rare-liver
Autoimmune Hepatitis since the age of three years old
Veselina from Sofia, Bulgaria has had Autoimmune Hepatitis since the age of three years. This is how the right treatment changed her life.
zhlédnutí: 86
Video
ERN RARE LIVER roundtable discussion Second-line therapy after the EMA recommendation
zhlédnutí 115Před měsícem
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...
Young people living with rare liver diseases - Introducing the ERN RARE-LIVER Young Panel: Sorcha
zhlédnutí 47Před 5 měsíci
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...
Patient video: How to use the ERN RARE-LIVER registry: R-LIVER
zhlédnutí 189Před 6 měsíci
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...
Young people living with rare liver diseases - Introducing the ERN RARE-LIVER Youth Panel: Magdalini
zhlédnutí 86Před 7 měsíci
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...
Young people living with rare liver diseases - Introducing the ERN RARE-LIVER Youth Panel: Silas
zhlédnutí 75Před 10 měsíci
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...
Update on the Acute Liver Failure Working Group of ERN RARE-LIVER on the Members Meeting 2023.
zhlédnutí 36Před 10 měsíci
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.
Update on the Biliary Atresia Working Group of ERN RARE-LIVER on the Members' Meeting 2023.
zhlédnutí 24Před 10 měsíci
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.
Update on the PSC Working Group of ERN RARE-LIVER on the Members' Meeting 2023 by Nora Cazzagon
zhlédnutí 54Před 10 měsíci
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.
Update on the Vascular Liver Disease Working Group of ERN RARE-LIVER on the Members' Meeting 2023.
zhlédnutí 44Před 10 měsíci
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.
Introducing EBAR - the European Biliary Atresia Registry of the ERN RARE-LIVER
zhlédnutí 48Před 10 měsíci
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...
2023 Covid Update
zhlédnutí 167Před 10 měsíci
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...
Young people living with rare liver diseases - Introducing the ERN RARE-LIVER Youth Panel: Malou
zhlédnutí 80Před 10 měsíci
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...
Young people living with rare liver diseases - Introducing the ERN RARE-LIVER Youth Panel: Lina.
zhlédnutí 82Před rokem
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...
"PSC - Aktuelle Therapiemöglichkeitenfür Leber und Darm" | Dr. Horst | APS 2023
zhlédnutí 1,8KPřed rokem
Vortrag im Rahmen des Arzt-Patienten-Seminars am 04.02.2023.
"PBC - Leberwerte gut, alles gut?" | Dr. Hartl & Dr. Uhlenbusch | APS 2023
zhlédnutí 1,4KPřed rokem
"PBC - Leberwerte gut, alles gut?" | Dr. Hartl & Dr. Uhlenbusch | APS 2023
"Wie bereite ich mich auf meinen Arztbesuch richtig vor?" | Dr. Schregel | APS 2023
zhlédnutí 241Před rokem
"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
zhlédnutí 147Před rokem
"Grundlagenforschung der Leber: warum spenden Sie Ihr Blut (...) ?" | Prof. Herkel | APS 2023
"Sport und Bewegung:der Schlüssel zur Gesundheit?" | Dr. Schillings | APS 2023
zhlédnutí 252Před rokem
"Sport und Bewegung:der Schlüssel zur Gesundheit?" | Dr. Schillings | APS 2023
"Auch mit Leberzirrhose kann man 100 Jahre alt werden" | Dr. Sebode | APS 2023
zhlédnutí 8KPřed rokem
"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
zhlédnutí 224Před rokem
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
zhlédnutí 630Před rokem
"AIH - Alles rund um die Therapie" | Fr. Fellinghauer & Dr. Steinmann | APS 2023
Clinical Patient Management System (CPMS) - enrolling and removing patients
zhlédnutí 42Před rokem
Clinical Patient Management System (CPMS) - enrolling and removing patients
ERN RARE-LIVER Members' Meeting 2022 in Hamburg
zhlédnutí 252Před rokem
ERN RARE-LIVER Members' Meeting 2022 in Hamburg
Latest Covid update on the general pandemic situation and the impact on rare liver disease patients
zhlédnutí 96Před 2 lety
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
zhlédnutí 875Před 2 lety
Workshop PSC | Primär Sklerosierende Cholangitis und Darmerkrankungen - F. Glaser Vortrag 2022
Workshop AIH | Wenn Tabletten mehr schaden als helfen? - J. Hartl Vortrag 2022
zhlédnutí 332Před 2 lety
Workshop AIH | Wenn Tabletten mehr schaden als helfen? - J. Hartl Vortrag 2022
Workshop PBC | Symptome der PBC - C. Weiler-Normann Vortrag 2022
zhlédnutí 538Před 2 lety
Workshop PBC | Symptome der PBC - C. Weiler-Normann Vortrag 2022
Workshop PBC | Klinische Studien: Was gibt es Neues - S. Steinmann Vortrag 2022
zhlédnutí 400Před 2 lety
Workshop PBC | Klinische Studien: Was gibt es Neues - S. Steinmann Vortrag 2022