This paper is in the following e-collection/theme issue:

Focus Groups and Qualitative Research for Human Factors Research (886) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1674) Peer-to-Peer Support and Online Communities (655) Consumer & Patient Education and Shared-Decision Making (703) Social Media for Parenting (42) Caregiving and Parenting for Chronic Pediatric Diseases (87) Family Skills and Family-based Interventions to Support Communication and Social Ties Within Families (25) User Needs and Competencies (315) User-centred Design Case Studies (603)

Published on in Vol 11 (2024)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/57833, first published .
Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases

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

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

Authors of this article:

Tom A Doyle1 Author Orcid Image ;   Samantha L Vershaw1 Author Orcid Image ;   Erin Conboy2 Author Orcid Image ;   Colin M E Halverson1 Author Orcid Image
Article Authors Cited by Tweetations Metrics

Tom A Doyle   1 , PhD ;   Samantha L Vershaw   1 , BS ;   Erin Conboy   2 , MD ;   Colin M E Halverson   1 , PhD

1 Center for Bioethics, Indiana University School of Medicine, Indianapolis, IN, United States

2 Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, IN, United States

Corresponding Author:

  • Tom A Doyle, PhD
  • Center for Bioethics
  • Indiana University School of Medicine
  • 410 W. 10th Street
  • Suite 3100
  • Indianapolis, IN, 46202
  • United States
  • Phone: 1 (317) 278-4052
  • Email: doylet@iu.edu