From a service research perspective, health care services heavily depend on the co-producer role of patients, on a strong collaboration of different professions and on the specific characteristics of the health care professional–patient service encounter. This leads to a dominance of individual solutions rather than standardized population-based care concepts such as disease management programmes. At the same time, health care services are highly emotional, risky, conducted under extreme stress, and patients – and sometimes also health care professionals – lack behavioural control. These aspects become even more important in the context of rare diseases where patients frequently carry expert knowledge, multi-professional treatment and care is essential, and particular challenges may arise from the fast progression of medical problems and lacking clinical guidelines.

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