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PKU resources and advocacy groups.

The websites below can help you become an advocate within the PKU community.

  • 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.

  • 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.

  • 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.

  • 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.

  • National PKU News ›

    This site provides links to news about PKU, resources and information on PKU, and diagnostic testing information.

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