Get connected with the PKU community!
Visit our Facebook page to meet other people and families living with PKU.
A summary of the PKU guidelines released by a group of PKU experts—the American College of Medical Genetics and Genomics (ACMG).
Learn why it’s important for people with PKU to keep blood phenylalanine (Phe) levels within recommended ranges.
Three different methods for tracking Phe intake. Work with your dietitian to choose what works best for you.
Learn how to prepare and perform your blood test in the comfort of your own home.
A contact sheet you can take to your appointments to keep track of everyone who helps you manage your PKU.
A guide to help begin a meaningful discussion with your care team about your experiences living with and managing PKU.
The NPKUA is the first national nonprofit organization to unite adults, families, statewide organizations, the medical community, and PKU-friendly businesses under one umbrella organization.
This site provides links to news about PKU, resources and information on PKU, and diagnostic testing information.
This toolkit is designed to be a guide for managing PKU. It includes information on PKU and the low-Phe diet, insurance, life transitions, lifestyle, and maternal PKU.
CPN is a nonprofit organization that aids individuals and families with PKU through public awareness, education, and direct assistance to help those who have been diagnosed with PKU reach their full potential.
Visit our Facebook page to meet other people and families living with PKU.