The following websites provide important information about PKU and how it’s managed.

National PKU Alliance: The National PKU Alliance works to improve the lives of individuals and families associated with PKU through research, support, education, and advocacy, while ultimately seeking a cure. The NPKUA is the first national non-profit organization to unite adults, families, statewide organizations, the medical community and PKU-friendly businesses under one umbrella organization

PKU TOOLKIT: Supported by Boston Children’s Hospital, Applied Nutrition, and the New England Consortium of Metabolic Programs, this toolkit is designed to be your personal guide for managing PKU. It includes information on PKU and the low-Phe diet, insurance, life transitions, lifestyle, and maternal PKU

PKU on YouTube: Overviews, science projects, personal stories, and observations about living with PKU

The National Organization for Rare Disorders (NORD): A federation of health organizations, patients, healthcare providers, and individuals. NORD helps eligible patients—those with medical and financial needs—afford the medications and treatment their healthcare professionals have prescribed

Screening, Technology And Research in Genetics (STAR-G) Project: The goal of the STAR-G project is to examine the financial, ethical, legal, and social issues posed by the use of tandem mass spectrometry in newborn screening. It explains about genetics, how screening with mass spectrometry is performed, and specific background information on PKU

Children’s PKU Network: The Children’s PKU Network (CPN) is a non-profit organization that aids individuals and families with PKU through public awareness, education, and direct assistance to help those who have been diagnosed with PKU reach their full potential

Parent Technical Assistance Center Network: Provides parent technical assistance including resources, materials, and information about Parent Centers, and Community Parent Resource Centers to help improve the outcomes for children with disabilities and their families

PKU Adults: This site provides links to resources and information on PKU, PKU symptoms, and DNA tests

PKU World Link: PKU knows no boundaries. Find out where people with PKU live; you can also find a pen pal with PKU in your state or in another country. A thorough history of the discovery of PKU is also presented

Mayo Clinic: The Mayo Clinic is a not-for-profit medical practice devoted to the treatment of complex illnesses. The website,, provides an overview of PKU, including topics such as treatment, prevention, self-care, and coping skills

Taste Connections: Taste Connections features low-protein products, such as bread mix and multibaking mix, that are good for patients with PKU or homocystinuria (HCU). The recipes were created by the mother of a patient with HCU; she has a master’s degree in Nutritional Science and presents workshops on low-protein cooking

Low-Protein: Started by the same woman who started Taste Connections, this site provides more low-protein food recipes for persons with HCU, PKU, methylmalonic acidemia (MMA), and tyrosinemia

PKU Listserv: The PKU Listserv is a great place for families of a child with PKU, people with PKU, and professionals involved in PKU treatment to share their ideas and concerns with others. This list provides an easy way for people all over the world to come together and communicate with one another about PKU

Regional PKU websites

Several companies provide medical foods (formulas) including


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