WFYI Indianapolis

How do traditional and social media converge to help those with rare diseases?

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Air date: November 18, 2012

Host: Anne Ryder

Bioethics Healthcare Policy & Public Health Patient Care Research
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Interview: Field piece by Mary E. Harris.



In a field piece by Mary E. Harris, the story of Jeneva Stone and her son Robert, who suffers from a previously unidentified genetic disease, is set against the backstory of the foundation of the Rare Genomics Institute. Jimmy Lin, a geneticist at Washington University in St. Louis, founded the institute, blazing the trail for his patients to use “crowd-funding” to build websites that tell their story and collect donations for research that could help identify their disorders. This unique fundraising method allowed Jeneva Stone to isolate the gene that was causing her son’s condition and connect with the small number of other families around the world who have children with the same condition.

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