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
.

Journals
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- 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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- Halverson C, Doyle T, Vershaw S. Social media use by patients with hypermobile Ehlers–Danlos syndrome. Molecular Genetics & Genomic Medicine 2024;12(6) View
- 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
- 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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- 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
- 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
- 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
- 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
- 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