Abstract

COSTA, Catarina; ALONSO, Isabel; SEQUEIROS,, Jorge  and  PANEQUE, Milena. As associações de doenças raras em Portugal: Uma fonte importante de apoio psicossocial. Psicologia [online]. 2022, vol.36, n.2, pp.108-118.  Epub Dec 31, 2022. ISSN 0874-2049.  https://doi.org/10.17575/psicologia.1803.

Rare disease associations in Portugal: An important source of psychosocial support: This study aimed at characterizing the rare disease patients’ associations, as a relevant source of psychosocial support. Thirty-eight participants were interviewed, from 23 patients’ associations (or its regional sections), connected to Centro de Genética Preditiva e Preventiva. Three conceptual categories have emerged in their discourses: (1) mission of their associations; (2) current context of associative work; and (3) strategies used and existing opportunities. The most common limitations were (1) the difficulty in finding volunteers; (2) the low literacy about rare diseases; (3) the limited involvement of professionals and of the general population; and (4) difficulties with funding. Our results showed that associations do play a key role in the advocacy for patients with rare diseases; and that it is possible to reinforce their articulation with existing resources, facilitating their integration with healthcare services and, thus, maximizing their visibility.

Keywords : Patients’ associations; Rare diseases; Advocacy; Portugal.

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