Mr. Jimmy Cheng-Ho Lin, MD, PhD, MHS is Founder and President at the Rare Genomics Institute (RGI). The Institute leverages cutting-edge biotechnology to tackle rare diseases. The RGI provides an expert network and online crowdfunding mechanism to link families with scientists, so that together they can pursue customised research projects for rare diseases. You can find out more about RGI here.
Recently, Mr. Lin, in an interview for the Orphan Drugs Summit (LINK), explained his motivation for founding the Rare Genomics Institute: “In my pediatric rotation at Hopkins during medical school, I met a family who has visited some of the top hospitals in the world to seek answers for their son. Alas, there was no clinical diagnostic that was available then – but from my PhD work, I had just helped sequence the exomes of individuals with cancer. This started as a journey to start an organization to help connect patients with research and clinical resources to end their diagnostic odysseys and start the search for therapies and cures.”
With over 7,000 rare illnesses, a large number is not actively being researched. Consequently, for these orphan diseases, there are no or only very limited, infrastructure to allow for investigation or treatment.
For more information on the Orphan Drugs Summit, on the 17 – 18 September 2015 in Copenhagen, Denmark, see: http://www.orphandrugssummit.com