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

Social Media for Parenting (50) Peer-to-Peer Support and Online Communities (797) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1911) Ethics, Privacy, and Legal Issues (617) Chronic Disease Self-Management in Childhood and Adolescence (183) Parenting (314) Pediatrics (278)

Published on in Vol 5, No 1 (2022): Jan-Mar

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/31411, first published .
Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns

Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns

Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns

Authors of this article:

Sarah Catrin Titgemeyer1 Author Orcid Image ;   Christian P Schaaf2 Author Orcid Image
Article Authors Cited by (17) Tweetations (7) Metrics

Journals

  1. Martindale J, Goldstein J, Xixis K, Lakhotia A, Rodman A, Strauss L, Strowd R, Bass N. Be in the Digital Room Where it Happens, Part I: Tweeting & Technology for Career Development. Child Neurology Open 2022;9 View
  2. Sullivan J, Schoch K, Spillmann R, Shashi V. Exome/Genome Sequencing in Undiagnosed Syndromes. Annual Review of Medicine 2023;74(1):489 View
  3. Sisk B, Kerr A, King K. Factors affecting pathways to care for children and adolescents with complex vascular malformations: parental perspectives. Orphanet Journal of Rare Diseases 2022;17(1) View
  4. Gillentine M, Wang T, Eichler E. Estimating the Prevalence of De Novo Monogenic Neurodevelopmental Disorders from Large Cohort Studies. Biomedicines 2022;10(11):2865 View
  5. Oliver D, Eshun-Wilsonova I, Benson J, Pitzer K, Washington K. Hospice Social Work Preferences for the Delivery of Facebook Support Groups: A Discrete Choice Experiment. American Journal of Hospice and Palliative Medicine® 2023;40(12):1339 View
  6. Dötsch L, Matesevac L, Strong T, Schaaf C. Caregiver‐based perception of disease burden in Schaaf‐Yang syndrome. Molecular Genetics & Genomic Medicine 2023;11(12) View
  7. Ostrovsky M, Rosenblatt A, Hollander N, Habot‐Wilner Z. Online support group for patients with inflammatory eye disease: Characterisation of members and assessment of benefits. Clinical & Experimental Ophthalmology 2023;51(7):704 View
  8. Shinske A, Hostetler E, Fowler C, Owens G, Campos C, Hilton V, MacCarrick G. Support and resources for patients with aortic disease. Vascular Medicine 2024;29(3):362 View
  9. Stafford‐Smith B, Sullivan J, McAllister M, Walley N, Shashi V, McConkie‐Rosell A. The book is just being written: The enduring journey of parents of children with emerging‐ ultrarare disorders. Journal of Genetic Counseling 2025;34(1) View
  10. Chang A, Huang S, Benjamin D, Schmidt J, Palmer C, Garrison N. Exploring the role of digital tools in rare disease management: An interview‐based study. Journal of Genetic Counseling 2025;34(1) View
  11. Pagoto S, Lueders N, Palmer L, Idiong C, Bannor R, Xu R, Ingels S. Best Practices for Designing and Testing Behavioral and Health Communication Interventions for Delivery in Private Facebook Groups: Tutorial. JMIR Formative Research 2024;8:e58627 View
  12. Leblond C, Rolland T, Barthome E, Mougin Z, Fleury M, Ecker C, Bonnot-Briey S, Cliquet F, Tabet A, Maruani A, Chaumette B, Green J, Delorme R, Bourgeron T. A Genetic Bridge Between Medicine and Neurodiversity for Autism. Annual Review of Genetics 2024;58(1):487 View
  13. Doyle T, Vershaw S, Conboy E, Halverson C. Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases. JMIR Human Factors 2024;11:e57833 View
  14. Ling J, Ashley A, Zahry N, Kao T, Wahman C, Resnicow K, Robbins L, Kerver J, Zhang N. A Mindfulness-Based Lifestyle Intervention Among Economically Marginalized Caregiver-Preschooler Dyads: Feasibility, Acceptability, and Satisfaction. School Mental Health 2025;17(2):715 View
  15. Low K, Treneman-Evans G, Wynn S, Ingram J, Powell J. Parental Use of Social Media and the Internet in the Context of Their Child’s Genetic Neurodevelopmental Disorder: Mixed Methods Study Nested in the GenROC Cohort Study. JMIR Pediatrics and Parenting 2025;8:e76526 View
  16. 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

Books/Policy Documents

  1. Popescu F, Dramburg S. Digital Allergology. View