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“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

(n=1), and miscellaneous (n=2). c Government sources included: National Institutes of Health (n=4). d Other internet exploration sources included: You Tube (n=1), Online Mendelian Inheritance in Man (n=1), own website (n=1), and undefined (n=4). e Other social media engagement types included: memorialized deceased spouse’s Facebook page (n=1). f Facebook groups included: Team Telomere (n=17), other dyskeratosis congenita (n=2), Myelodysplastic syndrome (n=1), Be the Match (n=2), Neutropenia (n=1), and Shwachman-Diamond

Emily Eidenier Pearce, Alina Majid, Toniya Brown, Rowan Forbes Shepherd, Camella Rising, Catherine Wilsnack, Ashley S Thompson, Melissa B Gilkey, Kurt M Ribisl, Allison J Lazard, Paul KJ Han, Allison Werner-Lin, Sadie P Hutson, Sharon A Savage

JMIR Form Res 2024;8:e64343