My Digital Refuge.
JAMA
; 331(20): 1707-1708, 2024 05 28.
Article
in En
| MEDLINE
| ID: mdl-38696211
In this narrative medicine essay, a medical ethicist discusses the complexity of juggling the interests of members in online forums dedicated to rare diseases after being blocked upon disclosing her affiliation with a medical school, thus barring her from the support and information she needed to manage her daughter's rare disease.
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Social Support
/
Rare Diseases
/
Consumer Health Information
/
Genetic Diseases, Inborn
Limits:
Humans
Language:
En
Journal:
JAMA
Year:
2024
Document type:
Article