PKU Adult Program
The PKU Adult Program is a new initiative of the National PKU Alliance that provides information and support for adults living with PKU. Adults with PKU face many challenges. The program provides a one-stop resource for adults seeking to improve their quality of life. This is the only program composed of a national network of adults with PKU, their families, clinicians, and industry leaders to address the variety of needs of adults with PKU.

The Adult Program consists of several different initiatives.

Adult PKU Clinic Grants

Clinics - Learn more about applying for a grant from the NPKUA to enhance your efforts in providing outreach and support to adults living with PKU as well as locating patients lost to follow-up. Click here for more information.

Clinical Reference Manual

One of the long term goals is to support the creation of a reference manual meant to target any practitioner who may be exposed to/see adult patients with PKU, but who does not perform metabolic patient care on a regular basis.

Strict metabolic control prior to conception and during pregnancy significantly improves the outcome of babies born to women with PKU. Despite this knowledge, babies with variations of Maternal PKU Syndrome continue to be born at an alarming rate. The PKU Adult Program aims to aggressively intervene and assist with the broad “issue” of Maternal PKU through a Maternal PKU Mentor Program that will be implemented in the summer of 2012 as well as an assistance program to help woman in need.

Supporting Adults Returning to Treatment

A short booklet is currently being developed to help adults with PKU return to diet. This booklet, created by adults with PKU, will offer information and short simple notes to help adults on their journey.

There are approximately 200 metabolic clinics around the United States that provide medical treatment and services for PKU. To find a clinic near you, go to our Clinic Locator on the homepage and click on your state.

Adult Web-Site

Plans are underway to create an adult focused website that will serve as the virtual home of the program and a community base for adults with PKU. Conceptually developed by adults with PKU, and specifically geared to the education and social support of PKU Adults, the website will be the only one of its kind. The hope is that this platform will also serve as an educational center for all aspects of adult PKU with educational webinars, short instructional videos, and social networking capabilities.

Many adults with PKU face issues around insurance reimbursement for the medical foods necessary to treat PKU. These needs will be addressed through a larger NPKUA insurance obmbudsman initiative that includes an insurance coverage guide and trained advocates to assist adults with insurance denials.

Learn more about the NPKUA 2010 Adult Summit by clicking here.