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.

Get connected with the PKU community!

Visit our Facebook page to meet other people and families living with PKU.