Request the kit
Order a Newborn Kit
The National PKU Alliance is proud to offer a welcome kit to help you and your family as you begin to educate yourselves about PKU and how to make it fit into the goals and dreams you have for your child.
Our Newborn Kit include fun items for your baby, items to help with PKU management, and helpful information to guide caregivers through their child’s diagnosis and care.
Request the kit
Request Newborn Kit
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My PKU Binder
My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials offer hundreds of tips, advice and what to do from birth to adulthood both practically and emotionally.
My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help.
Download Individual sections
Acknowledgements
Personal Health Form
Chapter 1: What is PKU?
Chapter 2: Treatment and Diet Overview
Chapter 3: Monitoring Blood Phenylalanine Levels
Chapter 4: Diagnosis to 2 Years
Chapter 5: Ages 3 to 6 Years
Chapter 6: Ages 7 to 12 Years
Chapter 7: Ages 13 to 17 Years
Chapter 8: 18+ to Adulthood
Chapter 9: PKU and Pregnancy
Chapter 10: Dining Out and Other Tips
Chapter 11: Traveling
Chapter 12: Emergency Preparedness
Chapter 13: Tracking Your Progress
Chapter 14: Insurance Coverage for PKU Treatment
Chapter 15: Resources
Chapter 16: Glossary
PKU and the Brain
PKU and the Brain is a summary of key research about PKU and brain function.
The PKU Binder* is a comprehensive manual on how to effectively manage PKU day-to-day. Filled with tips and advice, from birth to adulthood, on practical and emotional levels.
PKU and the Brain* is a summary of key research about PKU and brain function.
*Treatments and guidelines are constantly changing. The PKU Binder and PKU and the Brain do not reflect new treatments and updated guidelines. Visit our treatment section for the latest information. The NPKUA would like to thank BioMarin Pharmaceuticals; Applied Nutrition; Australasian Society for Inborn Errors of Metabolism; and Ann & Robert H. Lurie Children’s Hospital of Chicago for their generosity and expertise in helping to make this project a reality.