About Rare Disease Film Festival
Set to take place in Boston on October 3, 2017, the festival encourages filmmakers whose work addresses issues of concern to rare disease patients to submit their work
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 aims to increase awareness of these diseases among not only the general public but medical researchers as well. The event 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.
Bo made national news when he used Reddit and social media to find a diagnosis for the genetic disorder his daughter faces. Those same efforts led him to a researcher who is now investigating the disorder. Bo hosts the podcast “Stronger Every Day”. He co-founded Maine Rare. He’s the Maine State Ambassador for NORD (the National Organization for Rare Disorders).
Daniel made a 12 minute documentary on Menkes Syndrome narrated by Oscar nominee Mary McDonnell. In 2008 he founded the Ballston Spa Film Festival.
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 Ondine’s Curse (aka CCHS) and the award-winning animated short “Cuerdas” which shows how a young boy with a rare condition fits in at a new school.
“These films give patients and their loved ones a creative way to express their needs and concerns,” added Juliet Moritz, Executive Director, Strategic Development Department, Rare Diseases, at Premier Research, one of the festival’s sponsors, “And this festival will help build new connections in the rare disease community.”