The Disorder Channel Shines Spotlight on Rare Diseases




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A film-festival-turned-streaming-channel is highlighting life with rare diseases through short documentaries, movies, shows, and more. Launched earlier this summer on Roku and Amazon Fire TV, The Disorder Channel features a variety of content that was originally intended as part of a two-day film festival. However, when the COVID-19 pandemic forced organizers to postpone the event, they turned to on-demand video to continue sharing stories.

Following successful in-person events in 2017 and 2019, co-founders Daniel DeFabio and Bo Bigelow were reportedly looking for a way to continue highlighting rarely covered diseases like USP7, Menkes Disease, and PACS1.

“Once we knew this year’s festival couldn’t happen as planned, we wanted to get these films out there to as many people as possible,” DeFabio said in a press release.

The new channel also gave organizers a chance to expand the library to include films shown at prior events. Bigelow also helped add to the channel’s catalog by producing video versions of his “Stronger Every Day” podcast, where he discusses his daughter’s ultra-rare disease — a mutation of a gene called USP7. In all, the channel currently offers content representing more than three dozen rare diseases, including Batten Disease, Leukemia, Myotubular Myopathy, and Tay Sachs. And the channel continues to accept submissions for films and other content to add to their collection.

As a parent of a child with the ultra-rare Batten Disease (specifically CLN1), it’s been difficult finding stories, both real and fictional, that attempt to capture what living with and caring for someone with the disease is like. Faith-based films like Love, Kennedy (currently available on Prime Video) certainly help, but it’s refreshing to see a streaming option dedicated to telling rare disease stories to a broader audience.

The Disorder Channel is currently available for free on both Roku and Amazon Fire TV.

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