RARECast: An Entrepreneur Uses a Silicon Valley Approach to Tackle Rare Disease

When Matt Wilsey’s daughter, Grace, was diagnosed with the ultra rare disease NGLY1 deficiency, he traveled the world to get a diverse group of researchers to work on finding answers. His approach to driving research, he says, comes from his experience as a Silicon Valley entrepreneur. We spoke to Wilsey about his experience getting a diagnosis for his daughter, what he learned from others who had gone before him, and the importance of open collaboration across institutions.

Learn more about NGLY1, here.

RARECast is a weekly series by Daniel S. Levine. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013, which produces The Bio Report and RARECast podcasts. Read his full bio here.