RARE Screening and Discussion at Seattle Science Festival

Monday, June 4th
Film presentation at 7:00pm followed by a panel discussion concluding by 9:00pm
In the PACCAR Theater at Pacific Science Center
Free to NWABR and Pacific Science Center members | $5 for public

Click here for tickets.

What would you do if your child were diagnosed with a rare genetic disorder? Come learn about one mother’s struggle to mobilize research that could potentially help her daughter and others with a rare form of albinism.

We are excited to announce that Heather Kirkwood, who is featured in the film and who serves as Director of Outreach/Vice President for the Hermansky-Pudlak Syndrome (HPS) Network, will travel from Kansas for the event! She will be joined by Dr. Maren Grainger-Monsen, Director of the Program in Bioethics and Film at the Stanford University Center for Biomedical Ethics, Dr. Benjamin Wilfond, Director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Research Institute, and Dr. Malia Fullerton, Associate Professor of Bioethics and Humanities at the University of Washington School of Medicine, in the panel discussion after the screening.

Come learn about one mother’s struggle to mobilize research that could potentially help her daughter and others with a rare form of albinism. The Seattle Science Festival will have the exclusive opportunity to premiere the film, RARE, co-directed by award-winning filmmaker Dr. Maren Grainger-Monsen and Nicole Newnham, filmmaker and writer at the Stanford University Center for Biomedical Ethics.

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. It reflects the challenges faced by any family seeking answers when research is the only pathway to a loved one’s chances of survival. Learn more about the documentary by clicking here. Don’t miss this RARE combination of quality film and engaging discussion, all in the comfort of the newly refurbished PACCAR theater!

This event is presented in partnership with the Department of Bioethics and Humanities, University of Washington, the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Research Institute, and Pacific Science Center.

The “Collaborations to Understand Research and Ethics” (CURE) program was supported by a Science Education Partnership Award grant from the National Center for Research Resources and the Division of Program Coordination, Planning, and Strategic Initiatives of the National Institutes of Health through Grant Number R25OD011138.

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