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Kendall τ showed a weak positive correlation between overall Facebook usage and support group usage (r=0.334, P
Most members used the Facebook group to find medical information about the disease, to read about personal experiences concerning the disease, to get advice on caring for someone with this disease, and to share their personal experiences concerning the disease. They agreed that Facebook reduces and eliminates the problem of distance between people affected by rare diseases (Figure 1).
JMIR Pediatr Parent 2022;5(1):e31411
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Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis
ORs were calculated to compare the probability of a disease with known or unknown disease-describing parameters to be represented by at least one Facebook group: known prevalence (OR 3.98, 95% CI 3.39-4.66, P
Diseases and Facebook support groups by prevalence and type of disease.
Pediatric rare diseases on Orphanet and diseases with at least one group that follow the different inheritance modes (more than one may apply).
a More than one may apply.
JMIR Pediatr Parent 2020;3(2):e21694
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