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
Click here to learn more..>

BIOMARIN RELEASES RESULTS OF PHASE 3 TRIALS FOR NEW PKU TREATMENT

Click here to read about the study...>

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...>


MAY IS PKU AWARENESS MONTH

May 2018 is an exciting month for the NPKUA. The PKU Patient Registry now has close to 600 registrants. We challenge the PKU community to make the commitment to register for the registry and complete 4 surveys by May 31st. If you have completed all your surveys make sure check your "Surveys to Retake" tab and help us finish the month PKU strong! 

On June 1st NPKUA staff and volunteers will be joining the Patients & Provides for Medical Nutrition Equity Coalition on Capitol Hill for a legislative briefing and scheduled appointments with congressional staff. We encourage you to join our efforts to support the Medical Nutrition Equity Act (MNEA) by scheduling in-district meetings with your members of Congress. Let's make our voices heard! Learn more here.

For more PKU Awareness ideas click here.

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