Filmmaker Turns Lens on the Rare Disease Community

Emmy award-winning filmmaker Rudy Poe, in 2012, turned his lens on Hugh and Chris Hempel to document their effort to find a treatment for their twin daughters suffering from a rare lysosomal storage disorder and reform medical research in the process. The film, “Here. Us. Now.,” introduced Poe to the world of rare diseases. Now he’s in the process of taking a deeper look at the people in the rare disease community in his new film “Always in Hope.” We spoke to Poe about his interest in the rare disease world, what he’s hoping to accomplish in the new film, and how he’s using the Internet to find stories and raise money.