戻る Agenda
Movie Documentary: RARE
Session Chair(s)
Karen Jaffe
Consultant, United States
Hearing the patient voice, and understanding the patient perspective, are cornerstones of the drug development process. This year’s DIA Annual Meeting presents RARE, a movie documentary on Tuesday evening. Wine and light refreshments will be available.RARE tells the story of Donna Appell, an extraordinary mother, in a race against time to get a clinical trial going to treat her daughter’s rare genetic disease; the heartbreak when her daughter Ashley, whose disease is advancing with her age, is excluded from the trial; a surprising love story when Ashley falls in love with an earnest young man who also has Hermansky Pudlak Syndrome; and the intimate, intricate relationship between a research scientist and the patients to whom he inevitably becomes emotionally attached. Along the way, the film profiles the extraordinarily joyful, funny, resilient, and loving group of people who have HPS—blind, albino, and suffering from terrible chronic lung and stomach disease, they nonetheless remind us of the importance of love, hope, and community in the face of adversity.
Seats are limited: Advanced ticketing: First come, first serve. To obtain tickets to screen RARE, please visit the Attendee Registration Desk on Monday, no later than 5:00pm ** Please note that the DIA Courtesy Shuttle will not be available.