Rare Outreach Coalition was forced to postpone its May 18th event in New York City (Disorder: The Rare Disease Film Festival) due to COVID-19. ROC has now launched The Disorder Channel as a new platform to provide another showcase for rare disease films. The channel is available for free on the Roku platform and Amazon Fire TV. It features many previously unseen rare films and original videos. It also includes some films intended for this year’s festival, as well as favorites from prior years.
While millions are stuck at home, anxious about the future, and hungry for content, the channel provides stories of hope and inspiration. “Once we knew this year’s festival couldn’t happen as planned,” said Daniel DeFabio, co-founder of the festival, “we wanted to get these films out there to as many people as possible.”
The festival’s goal since its 2017 inception has been to unite rare-disease stakeholders in person in order to spur collaborations that lead to cures. This year’s event would have represented over 60 rare diseases, including Cystic Fibrosis, Epidermolysis Bullosa, Duchenne MD, Hemophilia, Menkes Disease, USP7, and Huntington’s Disease.
“It’s great to spread awareness about these diseases,” said festival co-founder Bo Bigelow, “but in the lobby between screenings is where we see these amazing chance meetings–a researcher learning about a clinical trial for another disease that could help her patient, for example.”
The arrival of COVID-19 has made those meetings impossible for now. “It’s unfortunately kind of a perfect storm,” said DeFabio. “Many in our audience each year would be some of the most vulnerable to the coronavirus, since they’re rare-disease patients.” Uncertain when it will be safe again to hold this type of in-person event, he and Bigelow contacted this year’s accepted filmmakers and offered them the chance to add their films to the channel.
The channel also offers a platform for creators to stream new content about rare disease, such as episodes of rare-disease talk shows. For example, Bigelow began creating a video version of his longtime audio podcast, “Stronger Every Day,” about his daughter’s rare disorder.
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