Rare is a brilliant documentary that invites viewers into the world of living with a rare genetic disease, introduces the doctors studying rare diseases and offers an intimate window into the realm of clinical trials. It is an honest portrayal of what it means to have a rare disease, the role of patient advocates, and successes and disappointments of clinical research. Rare was directed by Dr. Maren Grainger-Monsen and Nicole Newnham at the Stanford Center for Biomedical Ethics. Holly K. Tabor, PhD, assistant professor, Treuman Katz Center for Pediatric Bioethics, will be leading a panel to discuss this important issue along with Dr. Daniel Doherty, associate professor, Developmental Pediatrics; Dr. Bonnie W. Ramsey, director, Center for Clinical and Translational Research; and parents and advocates Dean Suhr, president, MLD Foundation; Teryn Suhr, executive director, MLD Foundation; and DeDe Van Quill, director, Foundation for Nager & Miller Syndromes.
Date: Monday, Mar 10, 2014 11:30 a.m. to 1 p.m.; film begins at 11:30 a.m. (lunch provided); panel discussion at 12:30 p.m., followed by Q&A
Location: Wright Auditorium, Seattle Children’s, 4800 Sand Point Way NE, Seattle, WA 98105
Contact: Please RSVP to firstname.lastname@example.org if you plan to attend, or contact email@example.com with any questions.