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How do you wish TV and film would portray living with a rare disease?
In a recent column I wrote, I critiqued how a new sci-fi, body horror series fell short in its rare disease representation. “The Beauty” does appear well-intentioned, but I wish the rare disease cases featured had more agency in the story.
That made me think: what are some aspects of living with SMA that the community at large would like to see in television and film? After all, one person’s opinion is just one person’s opinion. What matters most is what we collectively want to see.
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