Film Festival Focuses on Rare Diseases


A film festival happening at Mission Bay next weekend aims to put a spotlight on rare diseases.

Disorder: The Rare Disease Film Festival, which screens at Mission Bay Conference Center on Nov. 9 and 10, showcases 54 films dealing with some aspect of the 7,000 rare diseases, which affect one in 10 Americans.

It’s a first-of-its-kind event showcasing films from around the world that address the challenges of life with a rare disease. The goal is to promote collaborations among rare-disease stakeholders in order to reach cures and treatments.

“It was tough to choose from among this year’s submissions, since there were so many amazing films,” said Bo Bigelow, one of the festival’s co-founders.

“We couldn’t have been more energized by the enormous response from filmmakers all over the world who are sharing these rare-disease stories.”

The festival aims to increase awareness of these diseases among not only the general public but medical researchers as well.

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.

Some films are the first to be made about their subject disease, such as Jon Dorflinger’s film “Unconditional,” which deals with an ultra-rare neurodevelopmental disease called PACS1.

Gareth Burghes’ film “Life & Atrophy” screened at the 2017 festival where he met Cray Novick and Artemis Joukowsky, two other filmmakers focused on the rare disease Spinal Muscular Atrophy.

“We formed a partnership at the festival and endeavored to adapt Life & Atrophy into a new film, The Genetics of Hope,” said Burghes.

Among the films are “One in A Million” from Academy Award winning filmmaker Ross Kaufman (“Born into Brothels”).

Kaufman co-directed with Emmy nominee Jeremiah Zagar (“Captivated: The Trails of Pamela Smart”). Their short film beautifully addresses Charcot-Marie-Tooth Syndrome.

“Our Friend Jon” is a feature length documentary about a group of young filmmakers, each with a disability, who came together to film the horror movie script left behind when their friend Jon Hernandez died of a rare disease.

It is directed by Edward Payson and the cast includes Maria Olsen (“Percy Jackson and the Lightning Thief”).

Another Academy Award winning filmmaker, Cynthia Wade, directs “Beyond Blue,” a short documentary film capturing the challenges of a diagnosis with polycythemia vera (PV), a rare, chronic blood cancer.

In the film “Deep Blue Breath” several well known Hollywood actors come together to make a film envisioned by a boy with VADER syndrome.

Sean Astin (“Lord of the Rings”), Natasha Gregson Wagner (“High Fidelity”) and Ernie Hudson (“Ghostbusters”) are directed by Patricia Cardoso (“Real Women Have Curves”) in this touching story that makes leaps into animation and special effects as a sick boy imagines his battle with his disorder.

Thirty million people in America face rare disease but worldwide that numbers is 350 million.

The films in the festival take us around the world for stories from Italy, France, Greece, Spain, Israel, Romania, Bosnia, England, Ireland, Belgium, Germany, Netherlands, and Argentina.

Over forty disease topics will be addressed by the selected films including: Menkes Disease, USP7, Batten, Sanfilippo, EB, PACS1 Syndrome, SMA, NGLY1, Hunter Syndrome and Angelman Syndrome.

Tickets for the festival can be booked the event’s website and Facebook page.