Chances are you’ve never heard of Hermansky Pudlak Syndrome, or the HPS Network. And that’s good and bad. It’s good that you haven’t been diagnosed with it or know someone that has. But it’s bad because it’s often undiagnosed because of how rare it is, and because of the number of doctors that don’t know what it is or know when to test for it. There is no cure. Not yet. But there are some extraordinary people who are truly dedicated to finding one.
It’s rareness makes finding a cure difficult. So what can we do? It’s all about awareness.
Donna Appell founded the HPS Network 22 years ago.