This video features a discussion at Seattle Children's Hospital on March 10th, 2014, utilizing the film "Rare" which is a documentary about rare disease research and advocacy. The panel is moderated by Dr. Holly K. Tabor. Panel members include Dr. Bonnie Ramsey, Dr. Daniel Doherty, parents and advocates DeDe Van Quill from the Foundation for Nager & Miller Syndromes, and Taryn and Dean Suhr from the MLD Foundation. The film highlights the diagnostic journey and path of clinical research for rare diseases, and the role of advocacy using the rare disease Hermansky-Pudlak Syndrome (HPS), as an example.
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