Are we ready for our close-up?
The second annual Selections from DISORDER: The Rare Disease Film Festival at Biotech Week Boston will be held at the Takeda Auditorium in Cambridge, MA, on Thursday September 12.
The films aim to “build connections between the biopharma community, patient advocacy groups, patients” with a goal of inspiring conversations and ultimately action in new areas of treatment research.
“One of our big goals in starting [this] was to curate not only the films we screened but as much as possible to curate the audience too. 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,” said Daniel DeFabio and Bo Bigelow, Co-Founders of the film festival.
A synopsis of each film can be found here. The screening will include:
- Lou | Angelman Syndrome
- Menkes Disease- Finding Help & Hope | Menkes Disease
- Unconditional | PACS1 Syndrome
- Ian | Animated film
- Perfect Brothers | Goldenhar Syndrome
- Tess is not Alone | USP7 Gene Mutation
- Edge of Hope | Batten Disease, Sanfilippo Syndrome, Epidermolysis Bullosa, Myfio Myopathy
- Counting Every Second | Giant Axonal Neuropathy (GAN)
A portion of the proceeds will be donated to the Rare Outreach Coalition’s 7000 Films initiative, which matches rare disease communities with a filmmaker and funding to tell the rare disease story through a film.
In fact, one of the films being screened (“Unconditional, Raising a Glass Child with a PACS1 Sibling”) came out of this initiative.
Know of any movies, TV shows, or theatre productions about a rare disease? Share them and your thoughts with the Patient Worthy community!