Disorder: The Rare Disease Film Festival
Announces Its 2019 Dates and Call to Entries
Set to take place in San Francisco on November 9th and 10th, 2019, the festival
encourages filmmakers whose work addresses issues of
concern to rare disease patients to submit their films.
Disorder: The Rare Disease Film Festival (Disorder: RDFF) is a first-of-its-kind event showcasing films from around the world that address the challenges of life with a rare disease. Disorder: RDFF aims to increase awareness of these diseases among not only the general public but medical researchers as well. It will take place over two days at The Mission Bay Conference Center in San Francisco on November 9th and 10th. Film submissions are now open. “We've already received dozens of new compelling films telling rare disease stories most people could never imagine,” says event co-director Daniel DeFabio.
The event was first held in Boston in 2017. It 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. They were disappointed to find there were no film festivals 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. Those events are the basis for his short film Tess is Not Alone 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, about the disease affecting his son Lucas, 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, “So I began thinking how we could craft a new festival to include that more targeted audience.”
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 in 2008. Bigelow co-founded Maine Rare and was the NORD (National Organization for Rare Disorders) Ambassador for the state of Maine.
While the final selections of 2019's films have yet to be made, some films have been accepted early. One example is “At the Edge of Hope” by Dan Salvo. It shows families facing several rare diseases including Batten Disease, Sanfilippo, and Epidermolysis Bullosa.
"We are so excited to have our documentary "At the Edge of Hope" screen at Disorder: The Rare Disease Film Festival. We created this film because there were real, relevant stories to be told about heroes who have fought to create hope in the crushing world of rare disease. Having this film screen in this festival provides a wonderful opportunity to share these stories with those who may need to hear them the most," says Salvo.
Another early selection is the short animated film “Ian” from Argentina. Based on a true story, it is a heartbreaking and heartwarming look at how a boy in a wheelchair gets excluded from schoolyard play and what it takes to include him.
The 2017 festival screened 30 films over two days to mostly sold-out crowds. DeFabio and Bigelow are glad to have had support from some of the leading organizations in rare advocacy—NORD, Beyond the Diagnosis, and Global Genes, —as well as several leading orphan drug companies.
“By bringing together stories from across the rare disease community, The Rare Disease Film Festival calls attention to some of the 7,000 known rare diseases, increasing understanding among the scientific, advocacy and biotechnology communities,” said Srini Ramanathan, Ph.D., vice president, development sciences, Horizon Therapeutics. “Research and development begins with the patient and is sparked when science and compassion work together. As part of the San Francisco community, we look forward to the festival and coming together to collectively raise awareness of the rare disease patient journey, which we hope ultimately leads to better treatments and cures.”
"As researchers, we have an important obligation to understand the patient point-of-view and these extraordinary films help bring that to life," says Premier Research Vice President, Rare Diseases & Pediatrics, Angi Robinson. "We're focused on designing trials that result in meaningful outcomes. To do this, we have to bring the patient and their caregivers to the table, make them a part of the development process, and to understand the disease and what it's like to live with it every day." Premier Research was the first to sponsor the 2017 festival and returns as a top sponsor for 2019.
Between some of the film screenings, rare disease researchers and patient advocates will also share stories from their experiences. These discussions have been shown to spark new thinking towards translation applications of current treatments and inspire avenues for new research. Additionally, many filmmakers attending the festival will have an opportunity to participate in questions and answers with the audience following the presentation of their films.
More information on the festival can be found here: www.rarediseasefilmfestival.com.