Patient advocacy groups

National PKU Alliance (NPKUA)

The NPKUA is a collaboration of phenylketonuria (PKU) community members joining together as a national voice and supporting local efforts to raise phenylketonuria (PKU) awareness and drive advocacy and education, while ultimately looking for a cure.

www.npkua.org >

National PKU News

National PKU News provides resources and support for individuals, families, and clinicians managing PKU and other inborn errors of metabolism.

pkunews.org >

There are many Patient Advocacy Groups and institutes available to support patients with PKU. Check for more in your area.

Summary of key publications

Relationship Between Elevated Phe and Neuropsychiatric Symptoms and Cognitive Deficits in Adults With PKU

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Expert Panel Provides Strategic Recommendations for Managing Adolescents and Young Adults With PKU¹

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Learn more about PKU

Learn the symptoms of uncontrolled PKU

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Hear what the experts say

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Resources for phenylketonuria healthcare providers