This paper is in the following e-collection/theme issue:

Peer-to-Peer Support and Online Communities (645) Digital Pain Assessment and Management (170)

Published on in Vol 24, No 8 (2022): August

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/39172, first published .
The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups

The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups

The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups

Authors of this article:

Sadaf Ashtari1 Author Orcid Image ;   Adam Daniel Taylor1 Author Orcid Image
Article Authors Cited by (7) Tweetations (7) Metrics

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  2. Ashtari S, Taylor A. Rare Disease Patients and the Power of Online Support Groups: Implications for the Medical Community (Preprint). JMIR Formative Research 2022 View
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  5. Domaradzki J, Walkowiak D. Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study. Scientific Reports 2024;14(1) View
  6. Somers C, McCusker C, Prendeville P, Kelleher S. The centrality of healthcare and education interactions – An Interpretive Phenomenological Analysis of experiences of parents of children with Ehlers-Danlos Syndrome. Research in Developmental Disabilities 2024;151:104789 View
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