Mission and History

National PKU News provides resources and support for individuals, families, and clinicians managing PKU (Phenylketonuria) and other inborn errors of metabolism. Our mission is to leverage innovation, insight, and research to improve the health, well-being, and daily lives of those with PKU and other IEMs. 

Starting in 1989, National PKU News published a newsletter three times per year that provided essential news and information to the PKU community. With more than 2400 subscribers at its peak, the newsletter was a vital communication tool for the PKU community before the listserv, Facebook, and other resources. With subscribers in 35 countries, who included parents, young adults with PKU, professionals, grandparents, relatives, and other persons connected to families of affected persons, it was a truly global resource.

Much communication about and support for the PKU community goes on online. For this reason, the newsletter was discontinued in early 2015. With a focus on developing How Much Phe and our Amino Acid Analysis Program, National PKU News continues to provide a vital resource to the PKU community. The organization also administers the Guthrie-Koch Scholarship program, for college-age people with PKU.