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.

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10 YEARS OF PROGRESS
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PKU PATIENT REGISTRY
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NPKUA 2017 ANNUAL REPORT
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NPKUA PATIENT SURVEY:
91% SAY NEW TREATMENTS ARE IMPORTANT
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MEDICAL NUTRITION EQUITY ACT (H.R. 2587 AND S. 1194)
See how you can take action today...>

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


SHOW YOUR RARE ON FEBRUARY 28TH


Rare Disease Day 2019 will take place on Wednesday, February 28th. This year’s theme is Bridging Health and Social Care. For most people living with a rare disease, as well as their family members or caregivers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging. Share your story on social media and post with #ShowYourRare

Click here for more information.

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