The combination of high cost, long development times, and small patient populations for rare diseases is driving new models to accelerate drug development. The story of the newly formed rare disease company Vtesse is a compelling example. Driven by parents, advanced to the clinic by the National Institutes of Health, and licensed by a new company formed out of an orphan drug accelerator, Vtesse is advancing an experimental drug to treat Niemann Pick Disease Type C and other lysomal storage disorders. We spoke to Ben Machielse, CEO of Vtesse, about his company, the unusual collaborations that led to its formation, and what it says about how patients, government, investors, and industry can work together to speed the development of new therapies for rare diseases.
About Daniel Levine
Daniel S. 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. Levine most recently served as managing director of publications for Burrill & Company, a global financial services firm focused exclusively on the life sciences. There he headed corporate communications, served as editor of The Burrill Report, a monthly digital publication focused on the business of the life sciences, and hosted the publication’s weekly podcast. Since 2011, he’s served as the lead editor and writer of Burrill & Company’s acclaimed annual book on the biotech industry. His work with Burrill & Company began through the firm’s joint venture magazine startup The Journal of Life Sciences, where he led the creation of the publication’s website and served as web editor before advancing to editor.
Prior to joining Burrill & Company, Levine worked as special projects editor for the San Francisco Business Times where he won numerous awards for his coverage of the biotechnology industry. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications. He is also the founder of the online magazine Disgruntled: The Business Magazine for People who Work for a Living and author of Disgruntled: The Darker Side of the World of Work (Berkley/Boulevard). Prior to that, he served as the San Francisco bureau chief for Adweek magazine. His coverage of the biotechnology industry began at the start of his journalism career while a business reporter at The Oakland Tribune. Before entering journalism, Levine spent five years in the investment banking industry and served as a vice president and general principal of Herbert Young Securities in Great Neck, New York. He holds a bachelor’s in English from Vassar College and a master’s in journalism from the University of California, Berkeley.
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