Pop culture may help improve public’s awareness of rare disease issues
Although most movies on rare diseases do not provide adequate scientific information on the diseases they are featuring, they can potentially be used to increase the public’s awareness of some of the social and economic issues many patients and families living with rare diseases face, according to a study.
Researchers analyzed 20 popular movies on rare diseases, focusing on disease, patient, physician/scientist, and psychosocial issues related to rare diseases. They concluded that the image of rare diseases presented in movies is either inaccurate or simplified but movies often highlight important topics in the field including ethical, psychosocial, legal, or economic dimensions.
The authors noted specifically: the diagnostic and therapeutic odyssey, the role of patients’ advocacy groups, issues related to orphan drugs, the stigmatization often felt by patients living with rare diseases, and parents’ feelings of guilt.
Domaradzki J. Treating rare diseases with the cinema: Can popular movies enhance public understanding of rare diseases? Orphanet J Rare Dis. 2022;17(1):117. doi: 10.1186/s13023-022-02269-x. PMID: 35248134.