The National PKU Alliance works to improve the lives of families and individuals associated with PKU through research, support, education and advocacy, while ultimately seeking a cure.

The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you.

We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and PKU-friendly businesses to make a difference in the lives of people with PKU.

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TAKE ACTION NOW:
COVERAGE FOR MEDICAL FOODS

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NATIONAL PKU ALLIANCE ANNOUNCES RECIPIENTS OF 2014 RESEARCH GRANTS AND FELLOWSHIP Read more...>

NEW ON-LINE FOOD LIST AVAILABLE FROM PKU NEWS 
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NPKUA ADULT PROGRAM
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NPKUA TEEN & ADULT WEBSITE
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Do you struggle with managing your PKU? If so, then the Prism 301 clinical research study may be an option for you. The main purpose of the Prism 301 study is to see how safe and tolerable an experimental enzyme substitution therapy called PEG PAL is for adults with PKU.

People with PKU may be eligible to participate if they:

  • Are you 18 to 70 years old
  • Have a diagnosis of PKU with a high Phe level (so that we can see if PEG PAL works to lower your Phe level)
  • Have not received PEG PAL

Participants in the Prism 301 study will receive PEG PAL and study-related tests and procedures at no charge. In addition, participants may receive reimbursement for travel expenses. The information learned from the study and your participation may help improve treatment options for people with PKU in the future.

To learn more about this study, visit www.prism-pku.com.

 

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