My Digital Refuge

JAMA. 2024 May 28;331(20):1707-1708. doi: 10.1001/jama.2024.4961.
No abstract available

Plain language summary

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.

Publication types

  • Personal Narrative

MeSH terms

  • Access to Information
  • Communication
  • Consumer Health Information*
  • Databases as Topic
  • Genetic Diseases, Inborn* / psychology
  • Genetic Diseases, Inborn* / therapy
  • Humans
  • Internet
  • Physician-Patient Relations
  • Rare Diseases* / psychology
  • Rare Diseases* / therapy
  • Social Support*