As a nurse, a mom, and yes a crime-junkie podcast listenerI can’t stop thinking about the contradiction: we have the technology to find one criminal in a million, yet we don’t use the same tools to save the 1 in 10 Americans living with a rare disease. And here’s the most haunting number—35% of children with a rare disease die before the age of five. If we choose not to act when the science exists, is that not its own kind of crime?

We deserve a healthcare system that sees us as individuals, not averages. We deserve treatments tailored to our unique health fingerprints. We deserve to use science not only in crime labs, but at the hospital bedside where lives are on the line.

Rare isn’t rare. It is the hidden epidemic of our time and the future of medicine. The sooner we face that truth, the sooner we all get the care we deserve.

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.