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

Digital Health Reviews (3634) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (2667) Peer-to-Peer Support and Online Communities (998) Pediatrics (369) Parenting (399) 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 (2) 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