The new Phebe is live
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The Phebe Founding 100
The Phebe Founding 100 are drawn heavily from the PKU community, including PKUers, carriers, and those with no PAH gene mutation. As a founding member your input on how we prioritize meeting community needs will help redefine what it means to live with PKU both now and in the future. To join, create your account and opt in to the co-op.
Founding Initiatives
Food security and adult treatment sustainability
Our current campaigns revolve around food insecurity, which runs as high as 66% in PKU families, and young adult transition, which is when over half of PKUers fall out of treatment.
We've got amazing innovative features and PKU community events on our Phebe roadmap. Find out more at phebe.life.
PKU Science Illustrated
Phebe has illustrated a series of research papers about what it is like to live with PKU.
What happens when you eat protein
The first dynamic model, "What happens when you eat protein," illustrates the differences in metabolic processing and the systems affected. Inspired by Khan et al., University of Guelph, "Beyond phenylalanine to tyrosine: Mapping the comprehensive phenylalanine hydroxylase (PAH) pathway for systems biology," Biochem Cell Biol 2026;104:1-11.
View PKU Science Illustrated at phebe.life
About Phebe
Phebe Corporation is a patient-and-family-led research organization dedicated to improving the lives of people affected by PKU. Phebe users earn rewards they can choose to keep or donate to PKU and rare disease research organizations. Phebe is founded by North Carolina PKU family members Nina, Terry, and Ryan Kilbride.