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Show: November 18, 2012:
- How do traditional and social media converge to help those with rare diseases?
- What happens when a leading medical institution excludes a new drug from its treatment panel?
- What are the long term effects of ADHD?
- What happens when patients don’t follow doctors’ orders?
- How do you know if it is time to reach out for help with addiction?
- What makes your stomach turn?
- What do "mundane" behaviors accomplish?
- When should doctors retire?
- View all topics for the week
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How do traditional and social media converge to help those with rare diseases?
Host: Anne Ryder
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.
Additional Resources:
- Visit the homepage for the Rare Genomics Institute.
