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You will never be more moved by the movies: Selections from the Rare Disease Film Festival

When presenting a film festival on rare diseases, filmmaker Daniel DeFabio said his mission is simple: “If we can bring a little more knowledge, awareness and increase the possibility for collaboration, that’s all we’ve ever hoped for.” DISORDER: The Rare Disease Film Festival seeks to showcase films with the stories of individuals who are faced with rare diseases. With its smash success last year, selections from DISORDER will be shown as part of Biotech Week Boston on Sept. 6, 2018 at the Broad Institute in Cambridge, Massachusetts. And there’s a strong chance that you may never be more moved by the movies.

[Join us at BioPharm America proudly part of Biotech Week Boston]

Daniel and Bo Bigelow are two fathers of children with rare diseases who met at an advocacy conference. Daniel’s background is more in movie marketing, and he had created some films and commercials, and had experience launching a short film festival. Daniel was immediately impressed with how much advocacy (with tangible results) Bo had accomplished in the short time since learning he needed a diagnosis for his daughter, Tess. From their conversations, the Rare Disease Film Festival was born.

"One of our big goals in starting Disorder: The Rare Disease Film Festival was to curate not only the films we screened, but to curate the audience as much as possible too,” Daniel said.  “Meaning we wanted the patients and the advocates but also the people who might advance the research or the doctors or the geneticists who might need to make a rare diagnosis. When Biotech Week Boston asked if they could present selections from our film festival, we thought it was a perfect fit since they have already cultivated that type of audience for their events. We hadn't planned on doing a full festival event of our films again until 2019 so we're thrilled Biotech Week Boston is making this happen this year."

Last year, the team selected entries and screened about 30 films to a sold out audience. Since then, Daniel and Bo have made a bold effort to call for 7,000 films to align with the number of rare diseases out there.

“We say ‘7000 films wanted’. [After the festival] everyone was asking ‘what’s next?’ and we saw the power of these films. It occurred to us, who has yet to be heard from? It really conveys the lived experience and the perspective instead of the abstract in a medical journal. We decided to ask people who have a need that hasn’t been addressed in a film.”

For this year, here are some of the short films that will be featured:

Menkes Disease : Finding Help & Hope

Menkes_posterA ten-minute documentary on Menkes Disease, a rare fatal genetic disorder. AKA Kinky Hair Syndrome, it is the impaired ability to metabolize copper. Oscar-nominated actress Mary McDonnell narrates.

Tess Is Not Alone - A USP7 Story


When Tess was diagnosed with a rare mutation in her USP7 gene, her parents thought she was the only one in the world. This short film is an eight-minute documentary about USP7 and her parents’ ongoing search for more patients.

Rare in Common

1cc14a1754597212039e9453f34a3095--hopes-and-dreams-rare-diseaseA user-generated short-film about the inspiring people in the rare disease community. Parents of children with rare diseases share the hardships and challenges of raising children with disorders, and the impact it has had on their families.

Showcasing these films at Biotech Week Boston is helping drive visibility to these lesser- known diseases.

“Raising awareness is our guiding principle. Awareness is great, but action is better so we want to hit the right person and get the information out and find out what kind of treatments are available. There may be researchers who are working on something similar, and say ‘oh I was able to solve that for a different disease and can pivot for this.’ There’s a good chance people haven't thought to turn their attention to it.”

To buy tickets for the event or learn more, visit the website.


rare disease film festival

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