Rare Disease Report

Disorder: The Rare Disease Film Festival Is Coming to Boston

JUNE 01, 2017
Mathew Shanley
This October, Beantown will play host to an array of filmmakers, each bringing a unique perspective on a rare disease.
The inaugural 2-day Disorder: The Rare Disease Film Festival (Disorder: RDFF) in Boston (October 2-3) will showcase more than 20 films from around the world, each of which will address the challenges of being, caring for, and/or treating a rare disease patient.
The creation of the festival comes from the perseverance of Bo Bigelow and Daniel DeFabio. Bigelow, the father of Tess, made national news when he used Reddit and other forms of social media as outlets to find a diagnosis for his daughter’s USP7 genetic disorder. His short film on the disorder will screen for the first time at Disorder: RDFF.
"As a parent of a child with a rare disease, I've realized that it's the connections with other advocates that make all the difference,” said Bigelow. “Whether it's another family who knows what you're going through, a filmmaker whose vision perfectly captures your struggle, or a scientist whose cutting-edge research is precisely what you need, these connections spread hope, enthusiasm, and crucial information. That's why we're doing this festival.”
DeFabio’s story bypassed the internet and went right to film. His short film, “Menkes Disease: Finding Help & Hope,” has already screened at a number of festivals and medical conferences, and Oscar-nominated actress Mary McDonnell narrates the rare disorder that affects his son Lucas.
“As my documentary toured the festival circuit, I realized in some ways the more ideal audiences were at medical conferences,” said DeFabio, “I began thinking how we could craft a new event to combine the best aspects of a festival with those of a conference.”
In addition to the 2 films created by the festival’s founders, the Academy Award-nominated documentary short “Our Curse,” directed by Tomasz Sliwinski and centered around Ondine’s Curse [central hypoventilation syndrome (CCHS)], will be shown, as well as “Imagine,” which was shot by a British teenager navigating through life as a Niemenn Pick Type C patient. The National Organization for Rare Disorders (NORD), Global Genes, and others have already signed on to show support for the event. 
“Events like the RDFF are so important to help raise awareness for the 1 in 10 Americans with rare diseases,” said Lisa Phelps, director of marketing and community relations at NORD.
Film submissions are being accepted until June 15th, and attendees can look forward to more than just screenings. Researchers, filmmakers, and patient advocates are expected to be on hand to share their experiences within the rare disease community.
Rare Disease Report will be at the festival as media partners. More information can be found at: rarediseasefilmfestival.com

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