Networks in Rare Diseases

Abstract

Rare diseases are characterized by their low prevalence in a population, and since 1980 a social movement has gathered around this cause in many countries. In Brazil, the category of rare diseases emerged in 2000, culminating with the enactment of a National Policy geared at rare diseases. Rare disease patient organizations are the main actors of this social movement and since this is very recent in Brazil, this research was conducted to explore the topic. Using netnography as method, a content analysis of the Social Media Network Facebook was performed, aiming at understanding the way social movements have assembled around rare diseases and its role in portraying this type of diseases in Brazil. This chapter offers important insights into the way patient organizations are using social media to convey ideas and discourses, and to foster lay expertise on rare diseases.