Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community

Journals

1. Boyce L, Prybutok G, Prybutok V. Online groups show how technology supports healthcare needs for patients and families: an illustrative model for COPD facebook groups. Frontiers in Medical Engineering 2024;2 View
2. Somers C, McCusker C, Prendeville P, Kelleher S. The centrality of healthcare and education interactions – An Interpretive Phenomenological Analysis of experiences of parents of children with Ehlers-Danlos Syndrome. Research in Developmental Disabilities 2024;151:104789 View
3. Dwyer A, Somanadhan S. Nursing’s Role in Advancing Care for Rare Genetic Diseases. Nursing Clinics of North America 2025;60(2):349 View
4. Mills F, Drury J, Hall C, Weston D, Symons C, Amlôt R, Carter H. A mixed studies systematic review on the health and wellbeing effects, and underlying mechanisms, of online support groups for chronic conditions. Communications Psychology 2025;3(1) View
5. Schneider D, Brown E, Gluski J, Mishra A, Sciubba D, Lo S. Beyond the Clinic. American Journal of Clinical Oncology 2025;48(7):351 View
6. Bensaghir H, Ben Driss C, Benomar I, Akhssas Z, Mai O, Lahrech A, Fejjal N. Unmasking the Deception: A Pediatric Surgery Team’s Role in Diagnosing Factitious Disorder Imposed on Another. Sage Open Pediatrics 2025;12 View
7. Ahmed M, Okesanya O, Olaleke N, Adigun O, Adebayo U, Oso T, Eshun G, Lucero-Prisno D. Integrating Digital Health Innovations to Achieve Universal Health Coverage: Promoting Health Outcomes and Quality Through Global Public Health Equity. Healthcare 2025;13(9):1060 View
8. Kiley J, Corlett A, Mitchell-Sparke E, Jasper B, Wishlade T, Bhagra C, Wetzler S, Aiken C. Antenatal experiences of pregnant women with cardiac conditions: a systematic review and meta-synthesis. AJOG Global Reports 2025;5(3):100522 View
9. Hajar Safi M, Smith P, Meyer J, Daniels J. Illness perceptions in Raynaud’s phenomenon: A qualitative study. Health Psychology Open 2025;12 View
10. Bogart K, Limon M, Fischer S, Voss M. “I would love to talk to someone that actually understands”: Psychosocial experiences of adults with Fanconi anemia. Journal of Health Psychology 2025 View
11. Huang Y, Gui L. Beyond the face: multidimensional care challenges and unmet needs in Hemifacial Microsomia families. Frontiers in Public Health 2025;13 View
12. Lee S, Park S, So M, Chung H, Kim H, Kim A, Huh J. What kind of information is requested by patients and families with genetic disorders?. Journal of Community Genetics 2025;16(6):787 View
13. Purnat T, Wilhelm E, White B, Okan O, Rosario R, Scales D. Health promotion in the algorithmic age: recognizing the information environment as a determinant of health. Health Promotion International 2025;40(5) View
14. Kenaston M, Baldeo R, Murphy T. Addressing Palliative Care Gaps for Rare Congenital Disease in Adults: CM-AVM2 as an Example. Journal of Pain and Symptom Management 2025 View
15. Ford E, Coulson N, Davies E. Exploring Empowerment in Online Support Communities for People Living With Tic Disorders and Tourette Syndrome: Qualitative Survey Study of User Experiences. JMIR Formative Research 2025;9:e66912 View
16. Davis C, Bogaert L, Powell J, Low K. Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review. Journal of Medical Internet Research 2025;27:e77087 View

Books/Policy Documents

1. Louail N. Cases on Physician Cultural Responsibility, Ethics, and Biases. View