Next week, KQED will air two showings of RARE, a feature documentary that provides a closer look at the relationships between patients, advocacy groups and researchers involved in developing new treatments for rare diseases. The film was co-directed by award-winning filmmakers Maren Grainger-Monsen, MD, director of the Program in Bioethics at the Stanford Center for Biomedical Ethics, and Nicole Newnham, a filmmaker and writer in the program.
The above trailer introduces the main characters in the film Donna Appell and her adult daughter, Ashley, who was diagnosed at a young age with an extremely rare genetic disease called Hermansky Pudlak Syndrome (HPS). My colleague Susan Ipaktchian offers more details on the film in a release:
The filmmakers followed the two of them for three years, documenting their efforts to spread the word about the Hermansky-Pudlak Syndrome Network, reach out to affected communities so that others with the condition can be properly diagnosed and help identify enough HPS patients for researchers at the NIH to test a possible treatment. The film also follows the early results from the drug trial.
RARE will be shown locally on the Bay Area’s KQED Plus station (formerly KTEH) at 7 p.m. on Sunday and will be rebroadcast at 11 p.m. on Tuesday.