title: [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.
  
  
  METHODS
  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.
authors.affiliation: Grupo de Investigación PSiNET, IN3, Universitat Oberta de Catalunya, Barcelona, España; Observatorio de Enfermedades Raras, FEDER OBSER, Madrid, España. Electronic address: marmayones@uoc.edu.
authors.forename: Manuel
authors.initials: M
authors.lastname: Armayones
authors.affiliation: Observatorio de Enfermedades Raras, FEDER OBSER, Madrid, España; Grupo de Investigación ECCO, Universidad de Almería, Almería, España.
authors.forename: Samantha
authors.initials: S
authors.lastname: Requena
authors.affiliation: Grupo de Investigación PSiNET, IN3, Universitat Oberta de Catalunya, Barcelona, España; Observatorio de Enfermedades Raras, FEDER OBSER, Madrid, España.
authors.forename: Beni
authors.initials: B
authors.lastname: Gómez-Zúñiga
authors.affiliation: Grupo de Investigación PSiNET, IN3, Universitat Oberta de Catalunya, Barcelona, España; Observatorio de Enfermedades Raras, FEDER OBSER, Madrid, España.
authors.forename: Modesta
authors.initials: M
authors.lastname: Pousada
authors.affiliation: Observatorio de Enfermedades Raras, FEDER OBSER, Madrid, España; Grupo de Investigación ECCO, Universidad de Almería, Almería, España.
authors.forename: Antonio M
authors.initials: AM
authors.lastname: Bañón
mesh_terms: D003299:Cooperative Behavior; D003430:Cross-Sectional Studies; D005653:Fund Raising; D015438:Health Behavior; D006801:Humans; D033181:Information Dissemination; D057226:Information Seeking Behavior; D035583:Rare Diseases; D012106:Research; D012657:Self-Help Groups; D061108:Social Media / Q000706:statistics & numerical data*; D012944:Social Support; D013030:Spain
keywords: Apoyo social; Comportamiento cooperativo; Cooperative behaviour; Enfermedades raras; Pacientes; Patients; Rare diseases; Red social; Social networking; Social support