Rare Disease Report

Disorder: The Rare Disease Film Festival to Show 30 Films

AUGUST 10, 2017
Mathew Shanley
In June, Rare Disease Report announced its media partnership with the inaugural Disorder: The Rare Disease Film Festival in Boston. Earlier this morning, the festival released its list of 30 films that will be shown at the event.
The films will be on display at 7 scheduled screenings in Cambridge, MA from October 2-3, and each will address life with a rare disease. More than 25 rare diseases will be featured, and the films range from 1-65 minutes. Most, but not all, are documentaries.
The festival is the brainchild of Bo Bigelow and Daniel DeFabio. Bigelow, the father of a daughter with USP7 genetic disorder, will debut his short film, Tess is Not Alone, at the event. DeFabio’s short film, Menkes Disease: Finding Help & Hope, has already screened at several film festivals and medical conferences.
"The power of bringing together film, science, and rare disease families leads to renewed hope for all those given a one in a million diagnosis,” said Gareth Burghes, director of the film “Life & Atrophy.” “Disorder is a film festival that finds the common ground on rare diseases, empowering all those affected."
While several of these films are made by and featuring unfamiliar names, some, like The Magic Bracelet, have had contributions from some of Hollywood’s leading actors. The film follows a young girl facing Mitochondrial disease, and stars Academy Award winning actor J.K. Simmons (Spider-Man), with Hailee Steinfeld (Pitch Perfect 2), and James VanderBeek (Varsity Blues). was directed by Jon Poll (Meet the Fockers) and co-written by Academy Award Winner Diablo Cody (Juno).
The film was inspired by a Rina Goldberg. Its trailer is below:

Additionally, Academy Award-nominated actor William H. Macy (Fargo) narrates This is Michelle, a short about Epidermolysis Bullosa, while Academy Award-nominated actress Mary McDonnell (Dances with Wolves) narrates DeFabio’s work.
Below is a list containing some of the films to be featured at Disorder: RDFF:
What Sick Looks Like; directed by Nerris Nassiri Believe;
directed by Jo Ann Santangelo
The 100,000 Genomes Project - How We Get Results Tess is Not Alone; directed by Bo Bigelow
Until Now;
directed by Samantha Michele Buchanan
This is Michelle; directed by Patrice Lighter Life & Atrophy;  directed by Gareth Burghes Genetics vs Genomics
Menkes Disease: Finding Help & Hope; directed by Daniel DeFabio Chiari Malformation; directed by Elizabeth Brubaker and Nerris Nassiri Rare in Common; directed by Alisa Shakarian & Marc Dole B+;
directed by Nazir Mirzaee
Saving Sight; directed by Nate Strubhar Fragile X in Frame; directed by Rick Guidotti Imagine;
directed by Carl Mason
The Magic Bracelet; directed by Jon Poll
This is Mito;
directed by Jon Dorflinger
SickKids: Ask Hermin - Urea Cycle Disorder Adventures of Lucy; directed by Teddy Valentovich Cuerdas; d
irected by Pedro Solís García
directed by Jon Muedder
directed by Dan Masucci
Love is Out There; directed by Ghita Benslimane Special Blood; directed by Natalie Metzger
Our Curse;
directed by Tomasz ƚliwinski
Surviving Degos; directed by Dale Mattison Rare is not an Excuse;
directed by Jason Cohen
Up for Air;
directed by Artem Agafonov
Rare Disease Report will be at the festival as media partners. More information can be found at: rarediseasefilmfestival.com.
For more up-to-date information on the festival, follow Rare Disease Report on Facebook and Twitter.

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