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

E-Health / Health Services Research and New Models of Care (517) Peer-to-Peer Support and Online Communities (636) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1641)

Published on in Vol 24, No 12 (2022): December

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/42084, first published .
Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study

Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study

Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study

Authors of this article:

Megan Yabumoto1 Author Orcid Image ;   Emily Miller2 Author Orcid Image ;   Anoushka Rao2 Author Orcid Image ;   Holly K Tabor2, 3 Author Orcid Image ;   Kelly E Ormond1, 2, 4 Author Orcid Image ;   Meghan C Halley2 Author Orcid Image
Article Authors Cited by (7) Tweetations (4) Metrics

Journals

  1. Gunter C, Solomon B. Whither social media and clinical genetics?. American Journal of Medical Genetics Part A 2023;191(6):1489 View
  2. Pathak G, Chandy R, Naini V, Razi S, Feldman S. A Social Media Analysis of Pemphigus. JMIR Dermatology 2023;6:e50011 View
  3. Hakim Zada F, Ahmad Azahari A, Wong S, Ali A, Ismail N. Understanding Challenges of Genetic Testing on Neuromuscular Disorders from the Parental Lens. Journal of Personalized Medicine 2023;13(12):1652 View
  4. Baynam G, Gomez R, Jain R. Stigma associated with genetic testing for rare diseases—causes and recommendations. Frontiers in Genetics 2024;15 View
  5. Halverson C, Doyle T, Vershaw S. Social media use by patients with hypermobile Ehlers–Danlos syndrome. Molecular Genetics & Genomic Medicine 2024;12(6) View
  6. Wu D, Shead H, Ren Y, Raynor P, Tao Y, Villanueva H, Hung P, Li X, Brookshire R, Eichelberger K, Guille C, Litwin A, Olatosi B. Uncovering the Complexity of Perinatal Polysubstance Use Disclosure Patterns on X: Mixed Methods Study. Journal of Medical Internet Research 2024;26:e53171 View
  7. Rao A, Yabumoto M, Ward-Lev E, Miller E, Naik H, Halley M. Health-related quality of life in patients with diverse rare diseases: An online survey. Genetics in Medicine Open 2024;2:101889 View