Patients' Perspective, Quality of Life and Treatment Goals in Hailey-Hailey Disease: lessons learned from the German National Registry.

Our "real-life" data state a major disease burden and impact on the QoL for affected individuals, as well as limited disease control due to inadequate therapies. MDHHgermany can provide insights into improvement of healthcare support with this debilitating disease and improve QoL. In the long term, it aims to provide basis for further clinical trials, epidemiological studies and immunological investigations.