Literature DB >> 29412400

[Is "associativism" good for one's health? The case of rare diseases].

Rogério Lima Barbosa1, Sílvia Portugal1.   

Abstract

Based on the question of an inspiring work - "Is the Market good for one's Health?", this paper poses a similar question, centered on "associativism" (belonging to a labor group or association) and the field of rare diseases. Starting from the research carried out in the scope of the Master's Degree in Sociology of the School of Economics of the University of Coimbra, this text puts into perspective the formulations created for the field of genetic conditions that, mainly, depart from a Eurocentric vision. The field of rare diseases is analyzed, identifying the roles, relationships and motivations of the different actors, namely, civil associations, pharmaceutical industry, academy, government, and families. The analysis highlights the preponderance of the market and the production of medicines, identifying a governance model - Utility Model of Care - in which the person who suffers and his/her family are left devoid of their subjectivity and transmuted into medication and market agents.

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Year:  2018        PMID: 29412400     DOI: 10.1590/1413-81232018232.24032017

Source DB:  PubMed          Journal:  Cien Saude Colet        ISSN: 1413-8123


  1 in total

1.  "Living an Obstacle Course": A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome.

Authors:  Domingo Palacios-Ceña; Pilar Famoso-Pérez; Jaime Salom-Moreno; Pilar Carrasco-Garrido; Jorge Pérez-Corrales; Paula Paras-Bravo; Javier Güeita-Rodriguez
Journal:  Int J Environ Res Public Health       Date:  2018-12-25       Impact factor: 3.390

  1 in total

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