Disorder: The Rare Disease Film Festival (Disorder: RDFF) is a first of its kind event showcasing a myriad of films from around the world that address the challenges of life with a rare disease. Disorder: RDFF expects to screen over two dozen films. The festival aims to increase awareness of these diseases among the general public as well as medical researchers.
Originally scheduled as a one day event, the festival has now added a second date to allow for more film screenings through the generous sponsorship of industry leaders including Shire plc, Sanofi Genzyme, and Horizon Pharma.
“We’re proud to support the Rare Disease Film Festival, as we know one of the best ways to raise awareness of rare diseases is through storytelling,” said Yann Mazabraud, North America Head of Rare Diseases, Sanofi Genzyme. “Not only do patients’ stories shed light on the challenges they face, but they also demonstrate the resiliency and hope of the rare disease community and inspire us.”
“We have the privilege to champion underserved patient communities by placing them at the center of all we do,” said Flemming Ornskov, MD, PhD, CEO of Shire. “We are thrilled to be sponsoring the Rare Disease Film Festival and encourage any efforts to raise awareness about rare diseases, the patients living with them, and the collaboration needed to find new therapies.”
“I’m constantly thinking about how more people need to know about these incredibly inspiring people who persevere through incredible adversity, often doing selfless things for the benefit of others,” said Gail Moore, director of patient advocacy, Horizon Pharma plc. “The Rare Disease Film Festival is so important because it does just that – it’s shining a spotlight on these stories so that more people understand what it’s like to live with a rare disease.”
The Disorder: RDFF was created when two fathers of children with rare diseases – Daniel DeFabio and Bo Bigelow — met at an advocacy conference and realized they had both made films about their personal experiences. Through this shared experience, they decided to create the first-of-its kind film festival in the United States dedicated to rare disease.
Bo Bigelow made national news when he used Reddit and social media to find a diagnosis for the genetic disorder his daughter Tess faces. Those same efforts led him to a researcher who is now investigating the disorder and his experience became the basis for his upcoming short film on the USP7 genetic disorder, which will screen at the festival.
“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. 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,” explains Bigelow.
Daniel DeFabio’s award-winning documentary short film, “Menkes Disease: Finding Help & Hope,” is about the disease affecting his son Lucas, and has screened at numerous festivals and medical conferences. The film is narrated by the Oscar®-nominated actress Mary McDonnell.
“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.”
As they launch this new endeavor, DeFabio and Bigelow are glad to have the support from some of the leading organizations in Rare advocacy — NORD, Global Genes, The Mighty and MassBio — among other groups. DeFabio and Bigelow are not new to running film festivals and advocacy organizations. DeFabio worked for over 20 years in the entertainment industry and founded The Ballston Spa Film Festival, which is now in its tenth year. Bigelow co-founded Maine Rare and is the NORD (National Organization for Rare Disorders) Ambassador for the state of Maine.
As they launch this new endeavor, DeFabio and Bigelow are glad to have the support from some of the leading organizations in Rare advocacy — NORD, Global Genes, The Mighty and MassBio — to name a few.
“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 the National Organization for Rare Disorders (NORD).
Although film submissions are still being considered, Disorder: RDFF is pleased to already have a few excellent films committed such as the Academy Award® nominated documentary short, “Our Curse,” directed by Tomasz Sliwinski which explores the disorder Ondine’s Curse (aka CCHS); “Imagine” made by a British teenager examining life with Niemann Pick Type C; and the award-winning animated short “Cuerdas” which shows how a young boy with a rare condition fits in at a new school.
Between the film screenings, rare disease researchers, filmmakers, and patient advocates will also share stories from their experience. These discussions have been shown to spark new thinking towards translation applications of current treatments and inspire avenues for new research.
Film submissions are due by June 15th.
More information on the festival, can be found here: www.rarediseasefilmfestival.com.