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National PKU Alliance

The National Phenylketonuria (PKU) Alliance (NPKUA) provides help with understanding and managing PKU from diagnosis to adulthood. NPKUA resources include a New Parent Toolkit, a downloadable PKU Binder, and information on the latest treatments, insurance coverage and terms, a mentor program, cooking and food, research grants and more.

NPKUA hosts “Community Call.” These monthly peer support groups offer a place for sharing and connecting with others who understand the unique challenges of living with PKU. Please see the events calendar on NPKUA’s website for meeting times and other details for each of the following groups:

  • Caregivers of children ages 0 to 3
  • Caregivers of children ages 3 to 12
  • Caregivers of teens ages 13 to 17
  • Adults with PKU ages 18+
  • Adults with PKU ages 40+