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Resources for PKU Healthcare Providers

Patient Advocacy Groups

Flok.org

An organization dedicated to rallying the inherited metabolic disorder community to continuously improve our care and accelerate scientific progress.

flok.org

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.

npkua.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 PKU

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