Sharing the Rare Disease Experience On Screen

The experience of living with a rare disease is always personal and often isolating. Many times people living with a rare condition lack a local community of fellow patients with whom they can share their stories.

Sharing those unique stories is one of the goals of “Disorder: The Rare Disease Film Festival,” which will be held for a second time on November 8 and 9 in San Francisco.

More than 50 films will be shown at the festival, which heads to the west coast for the first time two years after it debuted in Cambridge, Massachusetts. The selections range from short glimpses inside the life of a patient, to documentaries explaining specific diseases, to animations illustrating what it’s like to live with a rare condition.

The festival was launched in 2017 by Daniel DeFabio and Bo Bigelow – two fathers of children with rare diseases who had made films about their families’ experiences. The dads hatched the idea after meeting at an advocacy conference.

Connections with other advocates “make all the difference” in raising a child with a rare disease, said Bigelow in explaining the motivation behind the festival.

“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,” Bigelow added.

The event also includes rare disease researchers and patient advocates who will share some of their experiences between screenings.

For the first time this year, biotechnology leader CSL Behring is co-sponsoring the event as part of its patient-focused mission to improve the lives of those living with rare and serious conditions around the world.

“Aligned with our purpose as a global biotech leader, this festival takes a unique and innovative approach toward raising awareness of the rare disease experience by sharing these important and meaningful films,” said Anthony Farina, CSL’s Chief Communications Officer. “These moving and personal works can serve to inspire both our patients in more than 60 countries around the world as well as our 25,000+ employees to discover, develop and deliver promising new medicines for rare disease patients. We are proud to support the festival.”