Impact of the Covid19 pandemic on health-related quality of life in patients with Fabry disease - implications for future care of patients with rare diseases

The worldwide Covid19 pandemic had a persistent negative affect on self-reported HR-QoL in patients with FD, including both mental and physical aspects. It remains unclear to what extend the disease itself and accompanying circumstances including local and governmental actions and restrictions contributed to these deteriorations. Our findings stress the importance for meticulous and constant interdisciplinary care including psychosocial aspects in patients with chronic progressive diseases as well as the need for a change in mindset concerning future medical care including further progress in digitalisation and a strengthening of the remote health care sector by authorities.