Rare 2012
Distributed by Helianthus Media
Produced by Maren Grainger-Monsen & Nicole Newnham
Directed by Maren Grainger-Monsen & Nicole Newnham
DVD , color, 56 min.
Sr. High - General Adult
Chronic Disease, Medicine, Genetics, Research
Date Entered: 07/18/2014
Reviewed by Nell Aronoff, Medical Education Services Librarian, University at BuffaloRare documents Donna Appell’s tireless crusade to find a cure for her daughter Ashley, who suffers from a rare genetic condition called Hermansky-Pudlak Syndrome (HPS). HPS is a fatal disease marked by pulmonary fibrosis, bleeding problems, and albinism. Donna founds a group called the Hermansky-Pudlak Syndrome Network in order to advocate for patients with HPS. Through this group, she is able to help assemble a pool of patients for a National Institutes of Health clinical trial to test the effectiveness of a drug that offers hope for a cure. Although this documentary focuses on one disease, it highlights the challenges involved in securing clinical research for rare conditions and offers perspectives on clinical trials that would be valuable introductions for students and viewers interested in understanding more about medical research. Caregiver, patient, and clinician viewpoints are explored, which helps to round out the film. Although a side storyline involving Ashley’s love life seems out of place, it does provide some levity and is only a fraction of the total running time. Libraries or collections that serve the medical research community should consider buying this film.
Awards
- Winner of Best Feature Film, Brooklyn Girl Film Festival 2012
- Winner Special Jury Award, Long Island Film Festival 30th Season, 2013