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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.