On Friday 2 July the second ERN RARE-LIVER Quality of Life (QoL) meeting began in Copenhagen. 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 England and The Netherlands. During the meeting, there were ‘live’ and online talks on both days, followed by group discussions with the aim of capturing the most central issues raised and to identify potential future areas to elaborate clinically and scientifically.

[read more]

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.

[read more]

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.

[read more]

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.

[read more]

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

[read more]