Josh Sommer is co-founder and executive director of the Chordoma Foundation, an organization focused on improving the lives of people affected by the rare cancer chordoma, and leading the search for a cure. With a sense of urgency prompted by his own chordoma diagnosis, Sommer has spent 15 years building a global movement of patients, doctors, and researchers to drive progress towards better treatments, care, and patient experience. The Chordoma Foundation works to advance research while increasing the speed and efficiency with which it moves, with seven treatments reaching clinical trials. Most recently, the foundation launched its own lab to bring economies of scale to the research of many collaborating investigators and to drive its own research, unconstrained by academic and industry incentives.
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Patients, and the networks of people who support them, already play a powerful role in sharpening our understanding of disease, but much more can be done to center their exper...