0042/2018 - Communication strategies of organizations of patients with rare diseases (RD) in Spain.
Las estrategias de comunicación de las organizaciones de pacientes con enfermedades raras (ER) en España.
Publicado
Author:
• Paloma López Villafranca - Villafranca, PL - <pallopvil@uma.es>Co-author(s):
• Antonio Castillo Esparcia - Esparcia, AC - <acastilloe@uma.es>Abstract:
This study focuses on the communication strategy of organizations of patients with Rare Diseases. Their objectives are to educate and inform about the pathologies, to raise awareness about their problems and to obtain social legitimacy to their demands.First, We analyzed the impact of this group in the most popular media in Spain: in press (El País, El Mundo, La Vanguardia, ABC and El Periódico), radio (Cadena Ser Onda Cero, Cope and RNE) and television (Telecinco, Antena 3, La 1, La Sexta, Cuatro)2012 to 2014. On second hand, a descriptive study has been carried out about communication on the web and social networks143 national organizations. Finally, we have made telephone interviews getting a representative sample, 90 organizations, in order to establish the relationship between the media presence and its economic situation and social image. This methodological triangulation enable us to achieve the objectives of the investigation. There is a greater social visibility of the group because of a growing number of media appearances, increasing in this way the amount of members, but not the number of donations and the knowledge of these diseases.
