Alliance of PKU Families

Alliance of PKU Families

What is PKU?

When untreated, people with PKU are at risk for severe neurological challenges, including mood disorders, IQ loss, intellectual disabilities, memory challenges, and concentration problems.

What Treatments Are Available?

Fortunately, the PKU test diagnoses almost all newborn children so that proper treatment can be provided immediately. Treatment for PKU consists of a very strict diet that eliminates virtually all protein. In the last decade, treatment has  evolved to include the medications Kuvan ((sapropterin dihydrochloride) and Palynziq (pegvaliase-pqpz) that enables people with PKU to create at least some of the enzyme that breaks down PHE. However, much more research needs to be done on treatments and the ultimate goal of a cure!

Other Resources:

Resources for Insurance Advocacy and Procuring Medical Foods: