El uso de Facebook en asociaciones españolas de enfermedades raras: ¿cómo y para qué lo utilizan? / The use of Facebook in Spanish associations of rare diseases: how and what is it used for?

Objetivo: Estudiar si el uso de Facebook está extendido en el ámbito de las asociaciones de pacientes con enfermedades raras y, en caso afirmativo, con qué fin se está utilizando. Método: Estudio descriptivo transversal para conocer la existencia, el tipo y los objetivos del uso de Facebook por parte de asociaciones españolas federadas en la Federación Española de Enfermedades Raras. El análisis de los objetivos se realiza sobre la base de un sistema de categorización que ha sido utilizado en el ámbito de enfermedades crónicas y adaptado a las particularidades de las enfermedades raras. Resultados: Las asociaciones están utilizando Facebook para sensibilizar sobre las enfermedades raras en general y sobre la propia en particular, así como para intercambiar contenidos relacionados con el apoyo psicológico, médico y social, la promoción y la difusión de la investigación, y la recaudación de fondos. Conclusiones: La alineación entre los intereses de las asociaciones a través de su presencia en Facebook y los ámbitos de actuación de la estrategia nacional de enfermedades raras permite ser optimistas sobre la viabilidad de utilizar Facebook como espacio de encuentro y trabajo colaborativo (AU)

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 (AU)

[The use of Facebook in Spanish associations of rare diseases: how and what is it used for?]. / El uso de Facebook en asociaciones españolas de enfermedades raras: ¿cómo y para qué lo utilizan?

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.