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. It is great that this project is making progress and we look forward to the results. More than 1,000 patients participated in the online survey, which will now be evaluated. Special thanks to the patient organizations for their fantastic support.