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首页> 外文期刊>Sociology of health & illness >How did uncommon disorders become 'rare diseases'? History of a boundary object.
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How did uncommon disorders become 'rare diseases'? History of a boundary object.

机译：罕见的疾病如何变成“罕见疾病”？边界对象的历史。

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摘要

The category of 'rare diseases' has been in growing use in the fields of public health and patient advocacy for the past 15 years in Europe. In this socio-historical inquiry, I argue that this category, which appeared initially as a by-product of the orphan drug issue in the United States of America, is a boundary object. As such, it has different specific local uses: a meaningless category for physicians, it relates to the patients' experience of illness, whereas the pharmaceutical industry first considered it as being synonymous with small markets and then with innovation. Public bodies contributed to framing a common and blurred use, based on a statistical definition whose purpose was to foster co-operation between the four groups involved in the issue. In the definition process of the category of rare diseases, the key actors were the patients and public bodies, not medical professionals or the pharmaceutical industry.
机译：在过去的15年中，“罕见疾病”类别在欧洲的公共卫生和患者倡导领域得到了越来越多的使用。在这一社会历史研究中，我认为，这一类别最初是作为美利坚合众国的孤儿药问题的副产品出现的。因此，它具有不同的特定本地用途：对医生而言是无意义的类别，它与患者的疾病经历有关，而制药行业首先将其视为小市场的代名词，然后是创新的代名词。公共机构根据统计定义制定了常见且模糊的用途，其目的是促进涉及此问题的四个小组之间的合作。在罕见病类别的定义过程中，关键参与者是患者和公共机构，而不是医疗专业人员或制药行业。

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