In this narrative medicine essay, a medical ethicist discusses the complexity of juggling the interests of members in online forums dedicated to rare diseases after being blocked upon disclosing her affiliation with a medical school, thus barring her from the support and information she needed to manage her daughter’s rare disease.

中文翻译：

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我的数字避难所

在这篇叙述性医学文章中，一位医学伦理学家讨论了在致力于罕见疾病的在线论坛中权衡成员利益的复杂性，因为她因透露自己与医学院的隶属关系而被封锁，从而无法获得管理自己所需的支持和信息。女儿的罕见病。