Quality of Life

Studying the quality of life (QoL) of patients suffering from rare liver diseases is an important activity of the network.

The second Quality of Life ERN RARE-LIVER consensus meeting July 2021, Copenhagen: a short report

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.

Quality of Life Workshop in Warsaw

The ERN Quality of Life (QoL) Workshop took place in Warsaw on September 22nd, 2020. The meeting was organized by our Warsaw colleagues Prof. Piotr Milkiewicz who coordinates ERN QoL Task Force and Dr. Maciej Janik, as well as by Prof. Ansgar W. Lohse and the ERN RARE-LIVER coordination team from Hamburg.

Quality of Life project presented at the EURODIS virtual meeting

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 2020.