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In this contribution we examine how rare disease patients experienced the COVID-19 pandemic, arguing that instances of epistemic injustice were exacerbated during this crisis. We contend that the pandemic management, characterised by a politics of vulnerability, prioritised an epidemiological lens at the cost of other ways of knowing health crises—including those embodied by the rare disease community. We identify crisis management as a place of definitional power where structures of ableism and deterministic conceptualisations of vulnerability have solidified. Through identifying places of epistemic injustice as well as of epistemic solidarity, we flesh out opportunities for change and propose policy recommendations to prevent ongoing and future harm.

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Silenced Expertise: Knowing the Pandemic from the Perspectives of Patients with Rare Diseases in Austria

  • 章节

  • 发表日期：

    2025年

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  • Antonia Modelhart,
  • Barbara Prainsack

摘要

In this contribution we examine how rare disease patients experienced the COVID-19 pandemic, arguing that instances of epistemic injustice were exacerbated during this crisis. We contend that the pandemic management, characterised by a politics of vulnerability, prioritised an epidemiological lens at the cost of other ways of knowing health crises—including those embodied by the rare disease community. We identify crisis management as a place of definitional power where structures of ableism and deterministic conceptualisations of vulnerability have solidified. Through identifying places of epistemic injustice as well as of epistemic solidarity, we flesh out opportunities for change and propose policy recommendations to prevent ongoing and future harm.