How does cinema represent people living with rare diseases?

A recent study analyzed 20 films from the mass culture that, in some way, portrayed people living with rare diseases and found that these films rarely address the clinical aspects of these diseases. The plots focus more on the patient’s daily life problems. And if scientific elements appear, they are not there for medical education but rather to meet the needs of a script. You can read this study in the Orphanet Journal of Rare Diseases.

That didn’t surprise the study’s author, Jan Domaradzki, a professor at the University of Poznan, Poland. As any communication researcher knows, the purpose of mass culture is to entertain. And entertainment is predominantly there when some dimension of education enters the script. Edutainment is the name given to this formula for building narratives in mass culture with some educational flavor.

For better or for worse, mass culture is a unique symbolic resource and a “guide” that helps the public understand rare diseases. “Even if the impact of popular culture on society is not decisive, it provides the public with images, examples, and arguments for discussion about the clinical, psychosocial, ethical, and economic implications of rare diseases,” summarizes Domaradzki.

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