The Northwest Association for Biomedical Research (NWABR) premiered the film RARE in June 2012, as part of the inaugural Seattle Science Festival and the 50th anniversary of the Seattle World’s Fair. The film featured a glimpse into the lives of people with Hermansky-Pudlak Syndrome (HPS) and illustrates the efforts of the HPS community to attract researchers and study participants to better understand and treat this rare genetic condition. The film was co-directed by award-winning filmmaker Dr. Maren Grainger-Monsen, Director of the Program in Bioethics and Film and Nicole Newnham, filmmaker and writer at the Stanford University Center for Biomedical Ethics.
Data2insight surveyed the 70+ film viewers using a retrospective pretest-posttest survey, which asked questions about how the film had informed and impacted them. Findings showed that viewers were more likely to volunteer for a clinical trial after viewing the film.