[The use of Facebook in Spanish associations of rare diseases: how and what is it used for?]

Abstract

Objective: To study whether the use of Facebook is widespread in the field of patient associations for rare diseases and, if so, the purpose for which the site is being used.

Method: A descriptive study was conducted to determine whether associations within the Spanish Federation for Rare Diseases use Facebook and, if so, the type of use and its objectives. The analysis was performed based on a categorization system that has been used in the field of chronic diseases and has been adapted to the specific characteristics of rare diseases.

Results: Associations use Facebook to raise awareness of rare diseases in general and particularly to share content related to psychological, medical and social support, the promotion and dissemination of research, and fundraising.

Conclusions: The alignment between the interests of associations through their presence on Facebook and policy areas of the national strategy for rare diseases is a reason for optimism about the feasibility of using Facebook as a tool for encounters and collaborative work.

Keywords: Apoyo social; Comportamiento cooperativo; Cooperative behaviour; Enfermedades raras; Pacientes; Patients; Rare diseases; Red social; Social networking; Social support.