“New syndromes and new genes are being described almost every day,” says TED Fellow Jimmy Lin, a director of clinical genomics at the National Institute of Health. Lin wanted to do a better job of connecting patient with researcher (and vice versa), so he launched the Rare Genomics Institute to help.
Read MoreMillions of people, many of them children, suffer from “orphan” diseases — illnesses so rare that no infrastructure exists to investigate or treat them. Now C Jimmy Lin’s Rare Genomics Institute puts hope and empowerment back in patients’ hands by connecting them with researchers, doctors and community support, and a crowdsourced funding platform.
Read MoreThe founder of the Rare Genomics Institute, Lin seeks to help families like the Nieders who are looking for genetic answers unlikely to be found through traditional research because a condition is so rare. The Rare Genomics Institute allows patients and their families to appeal to others on the internet and crowdsource funds for genetic research.
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