Affiliation:
1. Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia
Abstract
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.
Publisher
American Medical Association (AMA)