Abstract
ABSTRACT Many stakeholders are involved in knowledge production regarding rare diseases. However, disputes and contentions can arise in this field. In this article, I analyze how professionals and afflicted people mobilized the category of “rare diseases” within a hospital center in Italy. By exploring the micropolitics performed there, I observe how practitioners produced inclusion in the Italian health care system or exclusion from it. I then show how users of the health care service challenged such practices, through their own interpretations of “rare diseases,” while even the refusal to participate in patients’ organizations emerged sometimes as a form of resistance.
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