The internet knows more than my physician: qualitative interview study of people with rare diseases and how they use online support groups

HIGHLIGHTS

  • who: Unknown from the Ethics Approval All research activities were approved by the institutional review board of the Sacramento State University (protocol number IRB-19-20-173) have published the Article: The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups, in the Journal: (JOURNAL)
  • what: In this study, the focus was on Ehlers-Danlos syndrome (EDS), a genetic disorder. Objective This study investigated the approaches followed by patients with EDS to gain information about their disease, find solutions and treatments, and discover . . .

     

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