Communication toolkit for patient organisations

We are delighted to provide information to patient organisations on how they can suppport patients during this challenging time. We hope it will help especially the very small rare disease patient organisations, to communicate effectively about COVID-19 and associated issues for liver patients.


Video message

Ansgar Lohse, 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. Many thanks to patient organisations and collaborating centres for their input.

Letter to patients in several languages

In the early stages of the COVID-19 pandemic in Europe, ERN RARE-LIVER issued a statement to rare liver patients and in case of children, their parents. Available in several languages.