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

Formative Evaluation of Digital Health Interventions (3538) Health Information Exchange (157) Information Quality in Digital Media (421) Information Seeking, Information Needs (595) Design and Usability of Websites for Special User Groups (257) Supporting Home Care and Family Caregivers (285) Public Health Information Exchange Technologies (67) Caregivers in Participatory Medicine (42)

Published on in Vol 8 (2024)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/64343, first published .
“Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis

“Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis

“Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis

Authors of this article:

Emily Eidenier Pearce1 Author Orcid Image ;   Alina Majid2 Author Orcid Image ;   Toniya Brown3 Author Orcid Image ;   Rowan Forbes Shepherd1 Author Orcid Image ;   Camella Rising1 Author Orcid Image ;   Catherine Wilsnack1 Author Orcid Image ;   Ashley S Thompson1 Author Orcid Image ;   Melissa B Gilkey4 Author Orcid Image ;   Kurt M Ribisl4 Author Orcid Image ;   Allison J Lazard5 Author Orcid Image ;   Paul KJ Han6 Author Orcid Image ;   Allison Werner-Lin1 Author Orcid Image ;   Sadie P Hutson1 Author Orcid Image ;   Sharon A Savage1 Author Orcid Image
Article Authors Cited by (3) Tweetations Metrics

Journals

  1. 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
  2. Sarrió R, Benítez Fuentes J, García Samblás V, Guillot Morales M, Palacios Ozores P, Ruiz-Casado A, Torres-Jiménez J, Vieito Villar M. Impact of social determinants on the development, diagnosis, and treatment of cancer: recommended public health interventions. Clinical and Translational Oncology 2025 View
  3. Stevens K, Raj H, Paxton J, Longhurst H. Telomere Biology Disorders as an Example of Rare Disease Advocacy. Seminars in Hematology 2026 View