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.

Click here to learn more...>
BIOMARIN RELEASES RESULTS OF PHASE 3 TRIALS FOR NEW PKU TREATMENT
Click here to read about the study...>

NPKUA PATIENT SURVEY:
91% SAY NEW TREATMENTS ARE IMPORTANT

Click here for White Paper...>

LIFTING THE LIMITS FOR PKU
Click here to learn more...>

TAKE ACTION NOW:
COVERAGE FOR MEDICAL FOODS

Click here to for the story...>

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

2016 NPKUA ANNUAL REPORT
Click here for the Annual Report...>

PKU PATIENT REGISTRY
Click here to learn more..>

MAY IS PKU AWARENESS MONTH

May 2017 is an exciting month for the NPKUA. We challenge the PKU Community to enroll in the PKU Patient Registry and for those who have already registered we encourage you to complete surveys. The PKU Patient Registry launched in January and we have already over 500 registrants. We would like to reach 700 by May 31, 2017. By participating in the registry you can also see how your experiences and data compare with others through instant reporting tools. Your information can accelerate research, it starts with you!

On May 22nd and 23rd NPKUA Board members, staff and volunteers will be lobbying on Capitol Hill for the Medical Nutrition Equity Act (MNEA). We encourage you to join us! If you can't be there in person, no problem, you can schedule appointments with your legislators and a NPKUA representative can meet with them on your behalf. Make your voice heard! Learn more here.

You can check out more PKU Awareness ideas here.

 

 

 

|