RARE Daily

Rare Disease Is Coming to a Small Screen Near You

July 10, 2020

The COVID-19 pandemic has forced conferences and other public gatherings to either postpone plans or turn to online alternatives. But when the Rare Outreach Coalition had to postpone Disorder: The Rare Disease Film Festival that was set for New York City in May, its organizers took the opportunity to pursue a long-planned expansion into new venues.

The organization has just launched The Disorder Channel, a free service on Roku and Amazon Fire TV. The Disorder Channel showcases rare disease films. In addition to featuring some of the favorites from past festivals, it includes films that were to be shown at this year’s festival in addition to previously unseen rare films and original videos.

Though the coalition has long thought about creating a channel for its rare disease content, Bo Bigelow, co-founder of Rare Outreach Coalition, said having to postpone the festival accelerated its plans.

“This just kicked us into gear because we didn’t have festivals to plan,” he said. “A lot of people are stuck at home and they’re hungry for content. They’re looking for stories that are inspiring. And they are thinking a lot about illness in general. They’re picturing a universe where there’s a cure and this is what a cure would look like. You know, sometimes we’re able to tell that story. That’s something that would resonate with people—not just people who live with rare disease, but everybody.”

The festival, launched in 2017, has sought to unite rare disease stakeholders in person to spur collaborations that lead to cures. The New York event would have represented more than 60 rare diseases. Now, the creators of the event hope to inspire people at home.

Though the chance meetings and connections that the festival allowed for won’t happen on the channel, it opens the possibility for new types of programming that might not have been appropriate for a film festival.

For instance, Bigelow who has long produced the audio podcast Stronger Every Day, about his daughter’s rare condition, is now creating a video version that will be available on the channel. Other types of content from rare disease talk shows to rare disease conference videos may also make their way into the content mix. The channel is also featuring a darkly comic series about hemophilia that had been available as a web series.

All of this, though, is just doing what people with rare diseases have long learned to do—adapt, find new ways of doing things when old ones don’t work, and reimaging what’s possible.



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