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

Formative Evaluation of Digital Health Interventions (2912) Peer-to-Peer Support and Online Communities (740) Participatory Medicine & E-Patients (841) Information Seeking, Information Needs (534)

Published on in Vol 7 (2023)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/41610, first published .
Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community

Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community

Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community

Authors of this article:

Sadaf Ashtari1 Author Orcid Image ;   Adam Taylor1 Author Orcid Image
Article Authors Cited by (9) Tweetations (3) Metrics

Journals

  1. Boyce L, Prybutok G, Prybutok V. Online groups show how technology supports healthcare needs for patients and families: an illustrative model for COPD facebook groups. Frontiers in Medical Engineering 2024;2 View
  2. 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
  3. Dwyer A, Somanadhan S. Nursing’s Role in Advancing Care for Rare Genetic Diseases. Nursing Clinics of North America 2025;60(2):349 View
  4. 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
  5. Schneider D, Brown E, Gluski J, Mishra A, Sciubba D, Lo S. Beyond the Clinic. American Journal of Clinical Oncology 2025;48(7):351 View
  6. Bensaghir H, Ben Driss C, Benomar I, Akhssas Z, Mai O, Lahrech A, Fejjal N. Unmasking the Deception: A Pediatric Surgery Team’s Role in Diagnosing Factitious Disorder Imposed on Another. Sage Open Pediatrics 2025;12 View
  7. Ahmed M, Okesanya O, Olaleke N, Adigun O, Adebayo U, Oso T, Eshun G, Lucero-Prisno D. Integrating Digital Health Innovations to Achieve Universal Health Coverage: Promoting Health Outcomes and Quality Through Global Public Health Equity. Healthcare 2025;13(9):1060 View
  8. Kiley J, Corlett A, Mitchell-Sparke E, Jasper B, Wishlade T, Bhagra C, Wetzler S, Aiken C. Antenatal experiences of pregnant women with cardiac conditions: a systematic review and meta-synthesis. AJOG Global Reports 2025;5(3):100522 View

Books/Policy Documents

  1. Louail N. Cases on Physician Cultural Responsibility, Ethics, and Biases. View