Classic phenyleketonuria (PKU) is a rare metabolic disease that can result in mental retardation and other neurological problems when treatment is not started within the first few weeks of life. PKU can be controlled by diet when begun early and maintained.
This nonprofit organization is dedicated to providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria. Its web site includes information for adults with PKU, students writing papers, diet, legislation, research, support, and personal stories.
In addition to state information, this site offers good, easy-to-understand general information about PKU, such as “What is Phenylketonuria?” (English and Spanish), “A Teacher’s Guide to PKU,” “The Young Child with Mild Hyperphe,” “The Child with PKU,” and “A Babysitter’s Guide to PKU.” Conferences and related links are also included.
In addition to state information, this site has a useful section of Resources for Professionals Who Work with PKU. Titles include “Chef Lophe’s Phe-Nominal Cookbook,” “Finger Foods Are Fun,” “Games that Teach: Learning by Doing for Preschoolers with PKU,” “PKU for Children: Learning to Measure,” “The Essentials of PKU: An Informational Pamphlet for Young Adults with PKU and Their Significant Others,” and more.