Members of the Northwest Association for Biomedical Research (NWBAR) attended a special screening of the documentary RARE on Dec. 13, 2011 at Kakao Chocolates and Coffee in Seattle. A half-hour version of the hour-long documentary was shown, followed by audience discussion and a question and answer period. Heather Kirkwood, Vice President of the HPS Network, was on hand to speak about living with Hermansky-Pudlak Syndrome, experiences participating in a clinical trial and the film.
Attendees included research scientists, medical personnel of all sorts and members of other patient advocacy groups. After watching the film, the audience was encouraged to discuss the ethical implications of patient advocacy groups helping to promote awareness and participation in research studies. The audience asked lots of questions about HPS, Coffee, wine, cheese and cookies were served. About 40 people attended the event.
The HPS Network is working with the film’s producers to hopefully organize similar events in other cities in the future.