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

Focus Groups and Qualitative Research for Human Factors Research (1220) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1911) Peer-to-Peer Support and Online Communities (797) Consumer & Patient Education and Shared-Decision Making (862) Social Media for Parenting (50) Caregiving and Parenting for Chronic Pediatric Diseases (112) Family Skills and Family-based Interventions to Support Communication and Social Ties Within Families (53) User Needs and Competencies (456) User-Centered Design Case Studies (713)

Published on in Vol 11 (2024)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/57833, first published .
Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases

Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases

Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases

Authors of this article:

Tom A Doyle1 Author Orcid Image ;   Samantha L Vershaw1 Author Orcid Image ;   Erin Conboy2 Author Orcid Image ;   Colin M E Halverson1 Author Orcid Image
Article Authors Cited by (4) Tweetations Metrics

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  2. Martínez-Martínez M, García-Rodríguez I, Bermejo-Martínez D, Marqués-Sánchez P. The History of the #Rarediseaseday Campaign in Spanish on Twitter: Longitudinal Analysis of Hashtag Use and Social Network Analysis. Applied Sciences 2025;15(19):10359 View
  3. Mailloux A, Dinet J, Filloux J, Lanuel Y. Understanding the Real Needs and Expectations of French Patients with Amelogenesis Imperfecta Through Facebook Content: A Qualitative Thematic Analysis. Healthcare 2025;13(21):2740 View
  4. Davis C, Bogaert L, Powell J, Low K. Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review. Journal of Medical Internet Research 2025;27:e77087 View