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Redes de tratamento e as associa?§?μes de pacientes com doen?§as raras

机译：罕见疾病患者的治疗网络和关联

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Patients’ associations are an example of biosocial groups, since their formation is motivated by common biological characteristics, such as rare diseases, and they are sometimes included in social movements in health. Even though the National Policy on Comprehensive Care for Persons with Rare Diseases was enacted in 2014, patients still struggle to ensure access to and treatment by the Unified Health System. The way in which associations of patients with rare diseases gain access to treatment via social networks, is investigated. This research is part of a study about the use of social media by associations of patients with rare diseases, which employs netnography – ethnography applied to the web – as the data-gathering method. Data sources were pages of the associations on Facebook in Brazil. It was seen that the activities of the associations are multi-faceted, ranging from patient and family guidance about treatment and quality of life, to active participation in the elaboration and implementation of public policies. The discourses suggest that the focus of patients’ associations is, in the majority of cases, the access to drugs rather than the effective enactment of the national policy geared towards rare diseases.
机译：患者的关联是生物社会群体的一个例子，因为它们的形成是通过常见生物学特征的激励，例如罕见疾病，它们有时被纳入健康的社会运动。尽管2014年制定了对含有罕见疾病的人的全面的全面护理政策，但患者仍然努力确保统一卫生系统获得和处理。研究了罕见疾病患者通过社交网络获得治疗的患者联合的方式。该研究是关于使用罕见疾病的患者的协会使用NetNography - 民族造影的患者的研究的一部分 - 作为数据收集方法。数据来源是巴西Facebook上的关联页面。有人看来，协会的活动是多方面的，从患者和家庭指导范围内的治疗和生活质量，积极参与制定和实施公共政策。 Discours表示，患者协会的重点是在大多数情况下，获得药物的获取而不是有效颁布对稀有疾病的国家政策。

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