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

Peer-to-Peer Support and Online Communities (741) Digital Pain Assessment and Management (203)

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 (12) Tweetations (6) Metrics

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  1. Yao L, Ferawati K, Liew K, Wakamiya S, Aramaki E. Disruptions in the Cystic Fibrosis Community’s Experiences and Concerns During the COVID-19 Pandemic: Topic Modeling and Time Series Analysis of Reddit Comments. Journal of Medical Internet Research 2023;25:e45249 View
  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
  3. Glayzer J, Bray B, Kobak W, Steffen A, Schlaeger J. Lack of Diversity in Research on Females with Ehlers-Danlos Syndromes: Recruitment Protocol for a Quantitative Online Survey. JMIR Research Protocols 2024;13:e53646 View
  4. Halverson C, Doyle T, Vershaw S. Social media use by patients with hypermobile Ehlers–Danlos syndrome. Molecular Genetics & Genomic Medicine 2024;12(6) View
  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
  7. Tuzun S, Aygun E. The impact of an online support group on patients’ awareness of pregnancy-and lactation-induced osteoporosis. BMC Pregnancy and Childbirth 2024;24(1) View
  8. Pearce E, Majid A, Brown T, Shepherd R, Rising C, Wilsnack C, Thompson A, Gilkey M, Ribisl K, Lazard A, Han P, Werner-Lin A, Hutson S, Savage S. “Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis. JMIR Formative Research 2024;8:e64343 View
  9. Jones J, Black L, Black W. Patient and parent knowledge, understanding, and concerns after a new diagnosis of Ehlers Danlos syndrome. Orphanet Journal of Rare Diseases 2024;19(1) View
  10. Mills F, Drury J, Hall C, Weston D, Symons C, Amlôt R, Carter H. A mixed studies systematic review on the health and wellbeing effects, and underlying mechanisms, of online support groups for chronic conditions. Communications Psychology 2025;3(1) View
  11. Dhawan J, Sohrabipour S, Salman Al-Timimi A, Elangeswaran B, Choudhary O, Al Kaabi N, Ibrahim Masthan M, Santa Mina D, McGillis L, Truong W, Camacho Perez E, Schubart J, Lavallee M, Sheehan T, Cherin N, Mittal N, Clarke H, Bascom R, Rozenberg D, Alhatemi A. Characterizing the content and quality of internet resources on exercise training in Ehlers-Danlos Syndromes and generalized hypermobility spectrum disorder. PLOS One 2025;20(6):e0325709 View
  12. Claessens Z, Vanneste A, Van Isterdael C, Verbeke C, Wens I, Huys I. Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review and stakeholder consultations. Orphanet Journal of Rare Diseases 2025;20(1) View