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

Digital Health Reviews (3918) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (2747) Peer-to-Peer Support and Online Communities (1026) Pediatrics (394) Parenting (406) Social Media for Parenting (73)

Published on in Vol 27 (2025)

This is a member publication of University of Bristol (Jisc)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/77087, first published .
Three friends of diverse ages and ethnicities sharing a smartphone and laughing outdoors.

Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review

Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review

Authors of this article:

Charlotte Davis1 Author Orcid Image ;   Laura Bogaert2 Author Orcid Image ;   John Powell2 Author Orcid Image ;   Karen Low1 Author Orcid Image
Article Authors Cited by (8) Tweetations Metrics

Journals

  1. Trindade I, Borges J, Simionato M, Schiavinato M, Santos B, Aggio C, Siqueira F, Luz G. Redes sociais de pais de pessoas com doenças raras no Brasil: um estudo qualitativo. Revista Caribeña de Ciencias Sociales 2026;15(7):e4997 View
  2. Yeager C, Aube L. Patient perspectives on hemolytic disease of the fetus and newborn and fetal and neonatal alloimmune thrombocytopenia: common experiences and insights. The Journal of Maternal-Fetal & Neonatal Medicine 2026;39(1) View
  3. Roccatello D, Biancone L, Barreca A, Gesualdo L, Grandaliano G, La Manna G, Pani A, Alberici F. Diagnosis and management of C3 glomerulopathy in Italy: a Delphi consensus. Journal of Nephrology 2026 View
  4. Adams M, Lake E, Loi E, Schwab M. Navigating uncertainty or preparing for the future: A qualitative study of parental experiences with congenital lung malformations. Journal of Pediatric Surgery 2026;61(11):163411 View
  5. Victor B, Yilmaz N, Hoving C, Hillen M, Linn A. Facebook as a Lifeboat: An Interview Study Exploring the Role of Facebook in Supporting Parents of Children with Rare Diseases. Journal of Health Communication 2026:1 View
  6. Burgun A, Khnaisser C, Dault R, Ethier J, Celi L. Exploring needs and priorities in digital health management for rare disease patients and their caregivers: A mixed-methods study. PLOS Digital Health 2026;5(9):e0001240 View
  7. Chandragiri S, Hladschik-Kermer B, Matin M, Gerger G, Eitenberger M, Kletecka-Pulker M, Marchewka J, Jóźwik A, Pieczynska-Kovacs M, Tsegaye B, Mickael M, Tzvetkov N, Stolarczyk A, Adamska O, Matin F, Łysek-Gładysinska M, Rehan I, Elnagar A, Urbański P, Singla R, Wierzbicka A, Zhu Y, Zhang C, Ławiński M, Serafini M, Carlucci V, Milella L, Charuta A, Zelent A, Kamińska A, Horbańczuk J, Atanasov A, Wochele-Thoma T. Digital technologies in life sciences: advances and opportunities. Animal Science Papers and Reports 2026;44(3):285 View
  8. Kurtça V. Social Media Use Patterns among Parents of Children with Special Needs: Child Characteristics, Platform Preferences, and Daily Use Duration. Journal of Technology in Behavioral Science 2026 View