Background: With affected individuals being widely geographically dispersed, finding an in-
person support group can be a challenge. Families therefore turn to social networking …

Background: Because of the nature of rare diseases with affected individuals being widely
geographically dispersed, finding an in-person/offline support group itself can be a …

This two-part thesis—which is comprised of pre-existing interview data and a survey—will
attempt to create a framework that looks at the behaviors and motives of caregivers who use …

Background: Loneliness, social isolation, and feeling disconnected from society are
commonly experienced by parents of children with rare diseases and are, among others …

Research within social media is becoming more prevalent in the current climate of the digital
era. However, there is little known about the use of Facebook support groups to recruit hard …

Facebook dominates the social media landscape. The platform is not only the largest form of
social media, with more than 1.65 billion users averaging nearly 1 hour per day on the site …

Patients with newly-described or rare genetic findings are turning to social media to find and
connect with others. Blogs, Facebook groups, and Twitter have all been reported as tools for …

Background We aimed to define characteristics and needs of Facebook users in relation to
congenital anomalies. Methods Cross-sectional analysis of Facebook related to four …

Background: Social media may have the potential to enhance weight management efforts.
However, the acceptability of incorporating this entity into pediatrics is unknown. The …

Purpose This study examined the types of social support messages exchanged between
parents and/or caregivers of children with Autism Spectrum Disorders (ASDs) who …