Information video for rare liver patients regarding COVID-19
As time passes, our knowledge on COVID-19 and particular risk groups has increased, but how should you, as a patient, or a parent of a patient read the data? Thanks to collaboration with the patient organisations and other experts from our ERN, Ansgar Lohse, ERN RARE-LIVER Coordinator and specialist in both Hepatology and in infectious diseases, has produced a video message. It directly addresses the worries and fears regarding rare liver patients and COVID-19, and it sheds light on and contextualises registry data.
Quality of Life project presented at the European Conference on Rare Diseases and Orphan Products
There is some good news to share from the Quality of Life Working Group. They presented a poster on its two major projects at the online European Conference on Rare Diseases and Orphan Products in May. The projects are the patients’ on-line survey and the multi-centre cross-sectional study.
What is ERN RARE-LIVER?
ERN RARE-LIVER is a Europe-wide network for centres of excellence in the clinical management of rare liver disease in adults and in children. Types of diseases covered by the network currently include Autoimmune liver disease (AILD); Metabolic, Billary artresia and related disease; structural liver disease and rare liver disease in pregnancy.