Las Enfermedades Raras en la redel caso de FEDER en Twitter
- María Teresa Santos Díez
- Jesús Pérez Dasilva
- Koldobika Meso Ayerdi (ed. lit.)
- Simón Peña Fernández (ed. lit.)
- Ainara Larrondo Ureta (ed. lit.)
Éditorial: Servicio Editorial = Argitalpen Zerbitzua ; Universidad del País Vasco = Euskal Herriko Unibertsitatea
ISBN: 978-84-1319-075-4
Année de publication: 2019
Pages: 249-261
Congreso: Congreso Internacional de Ciberperiodismo (10. 2018. Bilbao)
Type: Communication dans un congrès
Résumé
The Internet has special relevance in the case of Rare Diseases, since it facilitates patients’ access to information about many pathologies, scientific advances that occur in different fields and allows them to share their experiences with other people who suffer from the same disease. The Internet is also used by health professionals to provide qualified opinions and even psychological support online. These activities are supported by associations, federations, organizations and online communities, which increasingly use the network to give visibility to Rare Diseases and carry out coordination, scientific dissemination and even search for funding for research projects. This communication has focused on the Spanish Federation of Rare Diseases (FEDER). To capture the activity of the account under study, the NodeXL software has been used.