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Revista Salud Uninorte

Print version ISSN 0120-5552On-line version ISSN 2011-7531


SECO SAUCES, M. Olga  and  RUIZ-CALLADO, Raúl. Virtual communities of patients with rare diseases. Analysis of their influence on decision-making and behavior change related to the disease process. Salud, Barranquilla [online]. 2018, vol.34, n.1, pp.160-173. ISSN 0120-5552.


To analyze how health communication and functions as networks of solidarity and support carried out by the Virtual Communities of Patients with Rare Diseases increase information on health problems and enable the participation of those patients in the decisions that affect them, increasing the Control in the management of their disease.


review of scientific papers published and indexed in the databases: SciELO, ENFISPO, PUBMED, BVS-LILACS, DIALNET, CUIDEN, CUIDATGE using descriptors in Health Sciences (DeCS): Rare Diseases; Communication in Health; Internet; Patient Participation and Virtual Health Communities, without temporal limitation in a first phase in Spanish, including later for their relevance some articles in English.


it is evinced the important role that virtual communities play in communication in healthcare and reveal empowerment as a key tool to achieve greater autonomy in the management of the disease, with positive consequences for their health and quality of life.


functions of virtual communities of patients with rare diseases, such as networks of solidarity, mutual support and communication in health, facilitate decisionmaking and the realization of favorable actions in the management and change of behaviors related to the disease process. Knowing what variables intervene to participate in these communities, would permit a better understanding of the problems that affect and preoccupy these patients, and thus provide adequate attention to their specific needs.

Keywords : (DeCS) Rare Diseases; Health Communication; Internet; Patient Participation; Virtual Communities of Health..

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