A social entrepreneur on a mission to bridge the clinical research divide between the U.S. & India
Even as the world awaits a vaccine to tackle the global pandemic instigated by the novel coronavirus, there are over 22,000 known medical conditions many of which are treatable with drugs, devices, biologics, or other therapies. About 7000-9000 of these conditions are considered rare disorders because taken one at a time, they affect fewer than 200,000 Americans. About 80% of these diseases are genetic in origin, 50% of them affect children and 30% of them do not live to see their 5th birthday. Taken together, rare diseases affect an estimated 350 Million people worldwide. That’s approximately the same number of patients living with Diabetes worldwide. However, a majority of these rare diseases continue to be neglected and most countries are yet to recognize them as a public health concern. After losing my own child to one such rare congenital disease in 2012, I decided to apply my years of postdoctoral R&D experience at the National Institutes of Health and startups towards accelerating clinical research, as 95% of rare diseases and the millions of people who have them remain undiagnosed or without any treatment options. I became a social entrepreneur.