TNPO2 Foundation

Inspired by a family’s journey to find personalized medicine for their newborn, the TNPO2 Foundation uses emerging technologies to create a systematic, replicable pathway to individualized healthcare for ultra-rare patients. We are building a consortium of researchers, funders, policy-makers, clinicians, and caregivers dedicated to changing the future for ultra-rare children and reshaping a healthcare system that abandons ultra-rare families. Our work is dedicated to rescuing patient populations that are conventionally considered "too small" for attention from biomedical research and industry. This conventional thinking dismissed the fact that while each unique ultra-rare population group may be tiny, collectively there are over 240,000 children living with treatable genetic conditions in the U.S. alone. Gaps in our medical system leave caregivers of these children with little guidance or support in an overwhelming biomedical landscape. Yet we live in an age of available, accessible science and technology that can bridge those gaps — and we have an ethical imperative to do so. Together, we can fundamentally change the lives of families caring for children with ultra-rare diseases, easing the immense burden on caregivers. We can start shifting the story around ultra-rare from hopelessness to courageous, wise yet urgent action, and good science.