PKU Awareness Year-Round

The NPKUA is committed to building a national awareness. We encourage local organizations, volunteers, and donors to come together to coordinate walks, runs, golf tournaments, picnics and camps to spread PKU awareness and raise funds for research because these events benefit you personally.  

It is these types of local events that have funded the academic research that has led to the commercial development of more treatment options for PKU – including Kuvan, PEG-PAL and GMP.  These advancements exist because adults and families came together on the local level to fund the work so these innovations could be picked up by industry leaders.

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Take the 48 Hour Phe Challenge!

In honor of PKU Awareness month take the initiative to help spread the word about PKU.

Why not challenge yourself or someone you know to take the 48 Hour Phe Challenge. What great opportunity for those without PKU to walk in the shoes of someone with PKU if only for two days. All you need to do is follow a low-Phe diet for 2 days!  Follow your friend or family member's diet for 48 hours. To make it easier you can even find low-Phe recipes and diet tools at When you have completed your 48 hours challenge click here to take a short 5-question survey to share your experience. After you complete the survey BioMarin will make a donation in your name to the National PKU Alliance!

What you can do to spread PKU awareness:

  • Wear your PKU awareness.
    Order a National PKU Awareness t-shirt here.
  • Hold an event.
    Click here to learn more about holding events to support PKU.
  • Be an advocate for people with PKU.
    There are many federal and state issues that affect people with PKU. You can help get our collective voice heard by contacting your elected representatives. Check out our "Take Action" advocacy page to read about the issues and learn how you can help.
  • Spread awareness on social media.

Facebook -NationalPKUAlliance
Post a status or photo that spreads awareness about daily living with PKU.

Twitter -@NPKUA_Info
Tweet about living with PKU. Use the hashtag #PKUAwareness in your tweets.

YouTube- NationalPKUAlliance
Watch and share the touching and informational video from the Tuxes for Tia gala. Copy and paste the following link into your personal website, blog, or even on your Facebook wall/Twitter feed.

  • Spread the word locally.
    Write an article or letter to the editor for your local paper, contact a local radio station or TV news station to set up an interview, distribute the PKU awareness flyer at work, school, and local businesses or make a presentation for your child's school/class.
  • Print PKU Awareness Stickers.
    Click here to print National PKU Awareness Stickers and support PKU December 3rd.



PKU Awareness Flyer
Download and print the awareness flyer to distribute/display at work, school, and at local businesses.

PKU Facts for Kids
PKU Facts for School Faculty and Staff
Download and print these fact sheets to bring to your child's school for a presentation on PKU.