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

Digital Health Reviews (3686) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (2686) Peer-to-Peer Support and Online Communities (1004) Pediatrics (371) Parenting (402) Social Media for Parenting (69)

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 (4) Tweetations Metrics

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  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 2026:163411 View