Selections from DISORDER: The Rare Disease Film Festival to show during Biotech Week Boston this September

Carlsbad, CA and Boston, MA –August 8, 2019: 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 September 12 from 4:00–8:00 pm.

The selected films aim to build connections between the biopharma community, patient advocacy groups, patients, and those who are passionate about finding cures for rare diseases, which may ultimately lead to new paths for research.

Tickets for this event are available here.

“One of our big goals in starting DISORDER: The Rare Disease Film Festival 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. 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,” said Daniel DeFabio and Bo Bigelow, Co-Founders of the film festival.

“Takeda is honored to partner with Selections from DISORDER: The Rare Disease Film Festival at Biotech Week Boston to bring to life the remarkable stories of people living with rare diseases,” said Ramona Sequeira, President of Takeda’s US Business Unit.  “We are passionate advocates for patients and take great pride in our work as we seek to positively impact the lives of patients around the world. We believe this event is an innovative catalyst to support and connect the rare disease community to build awareness, share information and explore ways to further improve patient care.”

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)

The event’s supporters include DISORDER: The Rare Disease Film Festival, Takeda, who is the host partner, FUJIFILM Diosynth Biotechnologies, Cydan, Global Genes, the Alliance for Regenerative Medicine, Kendall Square Association, CheckRare, CheckOrphan, Life Science Cares, MassBio, and the Massachusetts Life Sciences Center.

A portion of the event 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. The first film resulting from this “Unconditional, Raising a Glass Child with a PACS1 Sibling” will be shown at Selections from DISORDER: The Rare Disease Film Festival at Biotech Week Boston.

Contact Guadalupe Rodriguez, +1-760-930-0500

About Biotech Week Boston:

Biotech Week Boston, taking place September 9-12, 2019, is dedicated to accelerating the business of biotechnology through new ideas, science, technology and partnerships to make a positive impact on patient health. Featuring 15 unique events, it’s an unparalleled opportunity to meet and do business with those who are shaping our industry’s future.

About The Rare Outreach Coalition

The Rare Outreach Coalition is an organization which creates opportunities for education, awareness, conversations, and collaborations across multiple rare disease communities. It produces  DISORDER: The Rare Disease Film Festival. The full two-day DISORDER: The Rare Disease Film Festival is taking place in San Francisco, November 9–10, 2019. Go to