Experience of patients with a rare disease may be generic for recommendations and guidelines for managing larger patient groups

F. Brunsmann, P. Hof, P. Charbel Issa, I. Kopp & K. Rüther
Background: The role of collective patient experiences in health care needs to be defined. Pseudoxanthoma elasticum (PXE) patient organization in Germany actively supports quality improvement initiatives. There exists no special guideline for the rare disease PXE. Context: Collective experiences [for full text, please go to the a.m. URL]