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The growth of China’s biotechnology sector has been staggering. Beijing is pumping money into the industry, backing research efforts and helping launch a new wave of labs and incubators in the country. That’s a problem for the U.S. biotech industry and also affects rare disease patients who are waiting for a cure.

Among the experts speaking out against China’s growing influence in the biotech sector is John Crowley, CEO of the lobbying group Biotechnology Innovation Organization, or BIO.

Crowley is something of a rock star in the rare disease community. His story is as incredible as it is inspiring.

When Crowley and his wife were told his two young children had Pompe disease, a fatal genetic disorder, Crowley left his job in marketing to try to find a cure. He partnered with a researcher who was working on Pompe, and started a company that eventually developed a treatment to save the lives of his children and thousands of others.