Resources & Advocacy

PKU resources and advocacy groups.

ACMG Guidelines Summary Flyer ›

A summary of the PKU guidelines released by a group of PKU experts—the American College of Medical Genetics and Genomics (ACMG).
Blood Phe Control Questionnaire ›

Learn why it’s important for people with PKU to keep blood phenylalanine (Phe) levels within recommended ranges.
Methods for Tracking Phe ›

Three different methods for tracking Phe intake. Work with your dietitian to choose what works best for you.
Collect Blood Phe at Home ›

Learn how to prepare and perform your blood test in the comfort of your own home.
PKU Care Team Contact Sheet ›

A contact sheet you can take to your appointments to keep track of everyone who helps you manage your PKU.
PKU Clinic Discussion Guide ›

A guide to help begin a meaningful discussion with your care team about your experiences living with and managing PKU.

National PKU Alliance (NPKUA) ›

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.
National PKU News ›

This site provides links to news about PKU, resources and information on PKU, and diagnostic testing information.
PKU Toolkit by the Boston Children’s Hospital ›

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.
Children’s PKU Network (CPN) ›

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.