Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis.
Sarah Catrin TitgemeyerChristian Patrick SchaafPublished in: JMIR pediatrics and parenting (2020)
Facebook is widely used as a tool for support groups for rare pediatric diseases and continues to be relevant. Two-thirds of the groups are private groups, indicating group participants' need for privacy, which should be further explored. The advantages and limitations of Facebook as a tool for support groups in the field of rare diseases should be further investigated as it will allow health professionals to use Facebook more meaningfully in their counseling and guidance of affected individuals and their family members.