Originally posted on TED Blog:
Millions 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.
What is the mission of the Rare Genomics Institute?
There are over 7,000 rare diseases, and most of them are not being actively researched. Neither do they have patient organizations helping them. So what happens to most of these patients is that they go from place to place trying to find a diagnosis or seek help. The current medical establishment is not set up to do this because, number one, the medical knowledge is not there because the diseases are so rare; and, number two, there’s no infrastructure to help research these rare diseases.