Doenças raras como categoria de classificação emergente: o caso brasileiro

Abstract: This article seeks to describe the emergence of “rare diseases” category as a target of collective mobilization in Brazil, which suggests the potential constitution of a very new social movement based on a coalition of Brazilian patient organizations, their families and health professionals. It is estimated that in Brazil there are between 11 million and 15 million people with rare diseases. Inscribed within a global context of growing biomedicalization, that mobilization poses potential challenges to national policies of pharmaceutic services and to the Single Health System considering the high cost of related drugs. A minimum program of research in Science and Technology Studies is proposed, in order to foster social intelligence about the issue and to account for social and epistemic-ontological changes raised by that phenomenon.