“Rare Health” platform: a turnaround in the consumption of information about rare diseases

Abstract

This article aims to bring to the debate on advertising communication, the first results of empirical research into the “Rare Health Platform,” an interactive technology produced in open code, based on the Cívis Platform and structured on the Social Advertising methodology. It has the participation of researchers, teachers, students and organizations run by people linked to the universe of orphan pathologies. The digital environment aims to strengthen practices to combat media disinformation on the part of the health market, which profits from the lack of information about these diseases. The initiative allows ordinary people to register their institutions and projects, in an intuitive and free way, strengthening the exchange of experience by those with the same interest. As initial results, the platform has 46 registered organizations, the participation of more than 40 students and the effective contribution of representatives of social movements.