The National PKU Alliance’s mission is to improve the lives of individuals with PKU and pursue a cure.  The NPKUA provides information and support to adults and families, advocates for the reimbursement of medical foods and invests in targeted and peer reviewed research for the development of new therapies and a future cure for PKU.

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.

Click here to learn more...>

PKU PATIENT REGISTRY
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NPKUA 2017 ANNUAL REPORT
Click here to read the report...>

NPKUA PATIENT SURVEY:
91% SAY NEW TREATMENTS ARE IMPORTANT
Click here for White Paper...>

MEDICAL NUTRITION EQUITY ACT (H.R. 2587 AND S. 1194)
See how you can take action today...>

NPKUA TEEN & ADULT WEBSITE
Visit AdultswithPKU.org...>


HELP US CLOSE THE GAP IN TREATMENT COVERAGE

Please view and share the Medical Nutrition Equity Act Video 

Click here for more details.

THE FDA APPROVED PALYNZIQ


Palynziq (formerly know as Peg Pal and Pegvaliase) was approved by the FDA on May 24, 2018 as a new treatment option for PKU adults. 

Click here for the full press release.

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