Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases

This study identifies the usefulness of DRSGs for the RD community and provides a set of recommendations to improve future instances of DRSGs. These recommendations can be used to create DRSGs that are less prone to splintering into other DRSGs, thus minimizing the risk of having important RD-related information unhelpfully dispersed amongst a multitude of support groups.