“Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Anal...
“Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis
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Publisher
Canada: JMIR Publications
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Language
English
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Publisher
Canada: JMIR Publications
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Contents
Web-based information and social support are commonly used in rare disease communities where geographic dispersion and limited provider expertise complicate in-person support. We examined web-based resource use among caregivers of individuals with telomere biology disorders (TBDs), which are rare genetic conditions with long diagnostic odysseys and...
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Full title
“Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis
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TN_cdi_doaj_primary_oai_doaj_org_article_f0d9b4645bab43738c1548aa077bd21b
Permalink
https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_doaj_primary_oai_doaj_org_article_f0d9b4645bab43738c1548aa077bd21b
Other Identifiers
ISSN
2561-326X
E-ISSN
2561-326X
DOI
10.2196/64343
