The NPKUA works to improve the lives of individuals with PKU by providing educational services for the full life spectrum; initial diagnosis, school age, teen and adult support, and maternal health. The educational pieces and information available in this section will cover the technical, practical, and emotional details of living with PKU.

About PKU

Phenylketonuria (PKU) is a rare, inherited metabolic disorder that is characterized by the inability of the body to utilize the essential amino acid, phenylalanine (Phe). Amino acids, usually obtained from the food we eat, are the building blocks for body proteins.

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My PKU Binder

My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials include the newest and best thinking on PKU and offer hundreds of tips, advice and what to expect from birth to adulthood both practically and emotionally.

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PKU and the Brain

Current medical evidence has led experts on PKU to suspect that current therapy for PKU may leave individuals with an increased risk for subtle deficits in brain function. To address this, a group of PKU experts recently (2010) published a 107-page supplement on current topics surrounding this issue to raise awareness in the PKU scientific community.

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More Choices

More Phe, More Choices: Think Healthy! are a series of training modules for clinic or individual use, created by Laurie Bernstein, MS, RD, FADA; Sommer Myers, RD; and Casey Burn, RD at the University of Colorado Denver's Children's Hospital.

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School Information

It is important for teachers and other staff to understand the basics of PKU, why your child needs a special diet, and why careful supervision is needed. Anyone who comes in contact with your child will need a basic understanding of the dietary restrictions.

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Educational resources that provide critical information on various topics within the rare disease landscape. Some of which include: "Parenting A Child With Life-Limiting Illness", "Genetic Testing - Is This My Path To A Diagnosis?", and Using Storytelling to Raise Awareness For Your Rare Disease".

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