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My Digital Refuge.
Wexler, Anna.
Affiliation
  • Wexler A; Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia.
JAMA ; 331(20): 1707-1708, 2024 05 28.
Article in En | MEDLINE | ID: mdl-38696211
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.
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Social Support / Rare Diseases / Consumer Health Information / Genetic Diseases, Inborn Limits: Humans Language: En Journal: JAMA Year: 2024 Document type: Article
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Social Support / Rare Diseases / Consumer Health Information / Genetic Diseases, Inborn Limits: Humans Language: En Journal: JAMA Year: 2024 Document type: Article