Empirical research shows that patients with severe illnesses prefer the physician to dominate decision processes and provide the information needed. However, in rare diseases, due to the low prevalence and the lack of expertise, the patient is forced to become knowledgeable about his own disease...

Centers of expertise (CoE) are vital to the care and treatment of patients with rare diseases and play a central role in generating medical and scientific knowledge. This study explores the relationship between a CoEs internal resource availability, operational experience and functional network...