Hi, I’m Van Duesterberg, a scientist and patient with RP.
I coined the term patient-scientist when it became my mission to discover a cure for my blindness—and to help others navigate their own health journeys.
My background is in biophysics, where I specialized in building high-resolution automated microscopes to detect diseases early and accelerate discovery. For years, my career focused on advancing imaging technologies and creating early detection medical tools. But in 2010, everything shifted when I was diagnosed with retinitis pigmentosa, a rare genetic disease that leads to progressive vision loss. I was told there was no cure, no treatment, and that I should begin mobility training with a cane. I left my clinic devastated, with no resources beyond “accepting my fate.”
Instead of succumbing to the status quo, I began collecting and organizing my medical records, genetic data, and lab results. I dove into the scientific literature and taught myself everything I could about my condition. Eventually, I secured grant funding to model my own disease using patient-derived stem cells and grew retinal organoids to study it in the lab. By combining my expertise in microscopy and biophysics with my lived experience as a patient, I was able to explore new pathways toward treatments where none had been offered.
This journey has also shown me how overwhelming and isolating rare disease can feel, especially for patients and families without scientific training. I’ve met many parents fighting desperately for treatments for their children, facing the same lack of guidance I once did. That’s why I now share not just my scientific knowledge, but also the lessons I’ve learned as a patient navigating uncertainty—helping others track their health data, understand the science, and connect with rare disease communities working toward cures.
I believe innovation begins at the intersection of science and lived experience. My mission is to use both—my expertise as a scientist and my journey as a patient—to make the path toward treatments clearer, more hopeful, and more collaborative for others seeking answers.
I began my journey by collecting and keeping track of my own electronic health records, genetic data, and lab tests and being on top of the scientific literature of my rare retinal disease.
I have a deep passion for helping others navigate their health by sharing resources and connecting to other rare disease communities in finding their own cure.