How Do You Put Your Disease on the Agenda?
Through FDA’s Patient Focused Drug Development and similar initiatives, the value of the patient voice in drug development is clear. “It’s not just a question of science but also one of social justice,” suggests independent filmmaker Jennifer Brea, Director for Shella Films and founder of the rare disease community MEAction. “When no one’s paying attention to your community, and no one thinks that what you’re going through is particularly urgent or important, how do you put your disease on the agenda?”
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