RARECast: Filmmaker Turns Lens on the Rare Disease Community

April 1, 2016


In 2012, Emmy award-winning filmmaker Rudy Poe turned his lens on Hugh and Chris Hempel. He wanted 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.

RARECast is a weekly series by Daniel S. Levine. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013, which produces The Bio Report and RARECast podcasts. Read his full bio here. 

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