Current & Upcoming Films
Thursday, November 1, 2012 - 6:00pm to 9:00pm
Don't miss this special event, part of the Bay Area Science Festival!
Film presentation at 6:00pm, followed by panel discussion Q&A with the award-winning filmmakers, Stanford clinical researcher, and a clinical trial patient featured in the film.
One mother up against a one in a million disease, a one in a million chance for a cure
What would you do if your child were diagnosed with a rare genetic disorder? Come learn about an extraordinary mother struggling to mobilize research that could potentially help her daughter and others with a rare form of albinism.
This engaging film provides insight 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 fight this rare genetic condition. RARE gives viewers with a unique glimpse of what it is like to live with a rare genetic disease, provides an intimate window into the world of clinical trials, and highlights the challenges faced by any family seeking answers when research is the only pathway to a loved one’s chance at survival.
Filmed with intimate access over three years, as the clock ticks and the stakes get higher, RARE follows the families and the advocacy group as they travel to Puerto Rico and throughout the US in a race to fill a drug trial as they hope could prolong her daughter's life. Along the way we become part of a sweet love story as the daughter falls for an earnest young man who has the same fatal disease.
Learn more at www.rarefilm.org/
RARE is co-directed by award-winning filmmaker Dr. Maren Grainger-Monsen and Nicole Newnham, filmmaker and writer at the Stanford University Program in Biomedical Ethics and Film.
This free screening of RARE is brought to you by the Clinical Transitional Science Institute (CTSI) at the University of California, San Francisco; Stanford University School of Medicine; and SPECTRUM, the Stanford Center for the Clinical and Translational Education and Research (CTSA); and sponsored by the Bay Area Science Festival.