{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,8,5]],"date-time":"2025-08-05T12:43:10Z","timestamp":1754397790753},"reference-count":30,"publisher":"FapUNIFESP (SciELO)","issue":"2","license":[{"start":{"date-parts":[[2018,2,1]],"date-time":"2018-02-01T00:00:00Z","timestamp":1517443200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2018,2,1]],"date-time":"2018-02-01T00:00:00Z","timestamp":1517443200000},"content-version":"am","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2018,2,1]],"date-time":"2018-02-01T00:00:00Z","timestamp":1517443200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Ci\u00eanc. sa\u00fade coletiva"],"abstract":"<jats:p>Resumo Baseado no questionamento \u201cO Mercado faz bem \u00e0 Sa\u00fade?\u201d de um trabalho inspirador, este artigo realiza um questionamento semelhante, centrado no associativismo e no campo das doen\u00e7as raras. Partindo da pesquisa realizada no \u00e2mbito do Mestrado em Sociologia da Faculdade de Economia da Universidade de Coimbra, este texto coloca em perspectiva as formula\u00e7\u00f5es criadas para o campo das condi\u00e7\u00f5es gen\u00e9ticas que, majoritariamente, partem de uma vis\u00e3o eurocentrista. Analisa-se o campo das doen\u00e7as raras, identificando os pap\u00e9is, as rela\u00e7\u00f5es e as motiva\u00e7\u00f5es dos diferentes atores, nomeadamente, associa\u00e7\u00f5es civis, ind\u00fastria farmac\u00eautica, academia, governo e fam\u00edlias. Da an\u00e1lise sobressai a preponder\u00e2ncia do mercado e da produ\u00e7\u00e3o de medicamentos, identificando-se um modelo de governa\u00e7\u00e3o \u2013 Modelo Utilit\u00e1rio de Cuidado \u2013, no qual a pessoa que sofre e as suas fam\u00edlias s\u00e3o esvaziadas da sua subjetividade e transmutadas em medica\u00e7\u00e3o e agentes de mercado.<\/jats:p>","DOI":"10.1590\/1413-81232018232.24032017","type":"journal-article","created":{"date-parts":[[2018,2,3]],"date-time":"2018-02-03T22:09:58Z","timestamp":1517695798000},"page":"417-430","source":"Crossref","is-referenced-by-count":11,"title":["O Associativismo faz bem \u00e0 sa\u00fade? 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