Many are what Mr Lin describes as medical "orphans" wandering from hospital to hospital in search of someone who is able to throw light on their condition.
Mr Lin's day job as a genome sequencer at the University of Washington inspired him to createraregenomics.org, a website aimed at giving patients with these diseases access to experts in the field, and to offer them a chance to crowdfund research into their conditions.
Read MoreThe organization’s founder Jimmy Lin shared the stories of some of the patients using the service this week at TED. Anyone can view any patient's story on the Rare Genomics Insitute’s site, which describes the symptoms of the rare diseases that the patient is facing, then offers visitors a way to make a donation towards research.
Currently, the organization is piloting its program with four campaigns running on its site. However, Lin said that there are an additional 30 cases in the pipeline, with those patients paired with 13 different universities and research institutions across the country that are supporting the initiative.
Read MoreA reader of Nieder’s blog wrote last year to tell her about the Rare Genomics Institute at Johns Hopkins University. Set up in 2010, the institute is aimed at helping parents use the Internet to raise funds for sequencing that isn’t covered by insurance. Jimmy Lin, a medical student working toward both his MD and Ph.D. degrees who leads the group, explained to Nieder that DNA sequencing could help find the root cause of Maya’s condition.
Read MoreJimmy Lin is a computational geneticist at Washington University in St Louis, Missouri, and founder of the Rare Genomics Institute (RGI), a non-profit group in Baltimore, Maryland. On 25 October, he was named as one of 25 fellows chosen to present an 'idea worth spreading' at the annual Technology Entertainment and Design (TED) conference, to be held in February and March in Long Beach, California. TED will help Lin to develop company strategies and brand recognition for the RGI.
Read MoreJimmy Lin, the founder of the Rare Genomics Institute and a Hopkins Ph.D. and medical degree candidate, wanted to bring the crowd-funding model to undiagnosed or rare diseases. They number in the thousands but don't attract as much attention from government and university researchers, foundations and biopharmaceutical companies. Lin launched RareGenomics.org last month.Lin and a team of research volunteers he assembled hunt for so-called "mystery genes" that could explain a patient's undiagnosed ailment.
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