This chapter describes the main actions carried out by rare disease organizations. These actions are pursued with the umbrella goal to build what patients and their relatives consider to be the standard therapeutic toolbox for common diseases in contemporary medical practice, namely trained caregivers, informed doctors, medical treatments that improve patients’ health, standardized care and a degree of public visibility. Thus, rare disease organizations strive to identify the patients, to awake interest of relevant stakeholders by organizing symposia, to train healthcare professionals, to recruit and manage researchers and to raise public awareness. These goals are sometimes reached at the cost of a reorganization of the division of labour, with patients’ relatives taking on responsibilities that are generally considered to be the exclusive domain of health professionals, such as information, training and medical research.