Home / rare-liver.eu

Information for rare liver patients regarding COVID-19

As time passes, our knowledge on COVID-19 and particular risk groups has increased. Click here for more on COVID-19 and the specific implications for rare liver patients.

Survey on COVID-19 in patients with autoimmune liver diseases (AIH, PBC and PSC)

We are calling on autoimmune liver disease (AIH, PBC and PSC) patients to help us gain more information on the particular effects of the COVID-19 pandemic. We would be most grateful if you would take the time to complete the survey.

Treatment decisions for autoimmune hepatitis (AIH)

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.

Adeno-associated virus (AAV) based gene therapy in Wilson's disease

2020-09-22

Gene transfer to the liver may be used to treat specific liver diseases, but can also induce hepatic protein production to treat conditions that do not affect the liver itself. While gene therapy is still in its infancy, preclinical and clinical trials have already shown promising results in several diseases. For instance, in Hemophilia A, an X-linked bleeding disorder due to deficiencies in coagulation factor VIII, multiple clinical trials with AAV-vector liver-directed gene therapy have reported promising results in restoring therapeutically relevant FVIII levels with sustained production for years (1). [read more]
Effects of Primary Sclerosing Cholangitis on Risks of Cancer and Death in People With Inflammatory Bowel Diseases, Based on Sex, Race, and Age

2020-09-22

There are insufficient population-level data on the effects of primary sclerosing cholangitis (PSC) in patients with inflammatory bowel disease (IBD). [read more]
Cholangiocarcinoma 2020: the next horizon in mechanisms and management

2020-09-22

Cholangiocarcinoma (CCA) includes a cluster of highly heterogeneous biliary malignant tumours that can arise at any point of the biliary tree. Their incidence is increasing globally, currently accounting for 15% of all primary liver cancers and 3% of gastrointestinal malignancies. [read more]

ERN RARE-LIVER

Our mission is to improve the care of rare liver disease patients throughout Europe

Information for rare liver patients regarding COVID-19

Survey on COVID-19 in patients with autoimmune liver diseases (AIH, PBC and PSC)

Lay Summary of the ERN RARE-LIVER Position Paper: Second-line and Third-line Therapy for Autoimmune Hepatitis

Clinical Patient Management System (CPMS)

Scientific News

Adeno-associated virus (AAV) based gene therapy in Wilson's disease

Effects of Primary Sclerosing Cholangitis on Risks of Cancer and Death in People With Inflammatory Bowel Diseases, Based on Sex, Race, and Age

Cholangiocarcinoma 2020: the next horizon in mechanisms and management