What does patient engagement at the FDA really mean?
This post breaks down the emotional and systemic barriers rare disease families face when trying to be heard. From canceled meetings to complex regulatory language, it’s a firsthand look at how patients are often sidelined—and why we must keep showing up anyway. Learn the terms, know the system, and make your voice count.

I am not interested in being liked by one side or the other. I’m interested in saving lives. And sometimes that means saying the uncomfortable thing, at the uncomfortable time, in the most public way possible.