Rare Disease Advocate Turned Filmmaker Turns Lens on his Son


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Clinton Moore was a reluctant rare disease advocate. It took several years for him to become engaged in the rare disease community after his son Chandler was diagnosed with cystinosis, a rare, genetic, metabolic disease. Moore, who today is president of the Cystinosis Research Network, can add filmmaker to his credits. Moore tells his son’s story in a full-length documentary Walk in My Shoes. The film, which is available for free on YouTube, offers a view into the daily life of a boy and his family dealing with a rare disease. We spoke to Moore about his son’s rare disease journey, his own emergence as an advocate, and how he came to recognize the power of an individual to make a difference.

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