Get connected with the PKU community!
Visit our Facebook page to meet other people and families living with PKU.
PKU patients and advocates for lifelong management
PKU resources and advocacy groups.
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ACMG Guidelines Summary Flyer ›
A summary of the PKU guidelines recently released by a group of PKU experts—the American College of Medical Genetics and Genomics (ACMG).
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Blood Phe Control Questionnaire ›
Learn why it’s important for people with PKU to keep blood phenylalanine (Phe) levels within recommended ranges.
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Methods for Tracking Phe ›
Three different methods for tracking Phe intake. Work with your dietitian to choose what works best for you.
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Collect Blood Phe at Home ›
Learn how to prepare and perform your blood test in the comfort of your own home.
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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.
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PKU Clinic Discussion Guide ›
A guide to help begin a meaningful discussion with your care team about your experiences living with and managing PKU.
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PKU Pantry Table ›
BioMarin clinical coordinators set up pantry tables all over the country to educate patients and families about specialty low-Phe foods and recipe ideas. Contact your BioMarin account team to find one near you.
The websites below can help you become an advocate within the PKU community.
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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.
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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.
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The National Organization for Rare Disorders (NORD) ›
NORD helps eligible patients—those with medical and financial needs—afford the medications and treatments their healthcare professionals have prescribed.
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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.
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National PKU News ›
This site provides links to news about PKU, resources and information on PKU, and diagnostic testing information.
Below, you’ll find a list of regional organizations to help you find support closer to home.
