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Kits & Guides

Newborn Kit My PKU Binder PKU and the Brain

Order a Support Kit

National PKU Alliance is proud to offer support kits to help individuals and families learn about PKU and navigate different stages of the PKU journey. Each kit provides helpful resources and information to support you or your loved one along the way. We currently offer kits designed for three stages of the PKU experience:

Our Newborn Kit, designed for babies from birth to 1 year old, includes fun items for your baby, helpful items for PKU management and valuable information to guide caregivers through their child’s diagnosis and care.

Our Kindergarten Kit, created for children currently in or entering kindergarten, includes fun items for your child, a storybook for peer education and other helpful tools and PKU resources to support caregivers and their children as they begin their educational journey.

Is your child not of kindergarten age? Download and explore the digital versions of our Kindergarten Kit resources: A Guide to Section 504 Plans for Parents and Caregivers, A Guide to PKU for Educators and School Health Providers, Our Friend Has PKU

Our Reconnect Kit, designed for adults with PKU who are interested in returning to care or reconnecting with the PKU community, includes helpful resources and information on the latest treatment and management approaches. You’ll also find details on community support programs and information on symptoms that may be related to PKU. Each Reconnect Kit also includes an NPKUA water bottle.

Request a Support Kit

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.

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.