The HPS Network is hosting a special free screening of the film RARE. 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.
RARE follows the HPS Network through a phase III drug trial to try to find a treatment for the pulmonary fibrosis of HPS. 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.
To learn more about the film visit http://www.rarefilm.org
When: July 19th starting at 6:30PM
Where: 82-10 Queens Blvd., Elmhurst, NY 11373
Child care will be available during the film, for those three and older. Local artists will be engaging the kids in a special art project!
RSVP to firstname.lastname@example.org or 1-800 789-9HPS.