EpiBone spent its first ten years earning permission from the FDA to treat its very first patient. Through all of it, the emails from patients kept arriving: people in pain, researching their options, asking when. Many of the people who joined the company as founders, investors, and employees did so because they are, or love, someone living with the conditions it aims to treat. Nina's view of patients was formed in that inbox: they are informed, organized, and done waiting.
This talk maps the ways patients have become participants in medicine. They read the papers and use AI to summarize them. They organize advocacy that moves regulators. They invest in the companies working on their conditions, alongside institutional backers, through equity crowdfunding. And they press for access to investigational treatments through expanded access and right-to-try programs. For companies, clinicians, and policymakers, Nina lays out what this shift asks of them and how to build alongside patients from day one.