What is PKU Awareness Day?

National PKU Awareness Day is celebrated on Dec. 3 each year in the United States to raise awareness and support the 13,500 individuals affected by phenylketonuria (PKU). PKU is a rare, inherited metabolic disease in which the body cannot process phenylalanine (Phe), an amino acid found in all proteins, most foods and some artificial sweeteners. Without treatment, phenylalanine can build up to harmful levels and potentially cause brain damage. Learn more about PKU.

National PKU Awareness Day was first celebrated on Dec. 3, 2012. Since then, it has inspired the PKU community to unite in educating others, celebrating progress and pushing for more treatment options and a cure.

Why It’s Important

National PKU Awareness Day is an important opportunity for the PKU community to educate others and highlight the ongoing needs of those living with this rare condition. By amplifying our voices each year, the community helps build momentum and broaden understanding.

Increased awareness helps more people recognize the daily challenges of managing strict diets, accessing medical foods and staying connected to specialized care. It also strengthens advocacy efforts, inspires support for research and ensures that individuals with PKU, and those who care for them, feel seen, heard and supported.

Ways to Get Involved

• Join us in spreading the word. Like, comment and share posts on social media, and use the hashtag #PKUAwarenessDay. 
• Share your photo with NPKUA. Share your photo to be featured online! Throughout Dec. 3, we’ll be spotlighting our incredible PKU community members across our social media channels. Email your photo to [email protected] along with your name and age (optional).
• Wear your support. Purchase and wear your PKU Awareness Day apparel to raise awareness and help spark conversation on Dec. 3 and beyond!
• Light Up Blue for PKU. Participate in lighting up your home, workplace or community landmarks in blue to show your support.
• Connect with the media. Reach out to local media to share your personal PKU experience and why raising awareness matters. Use our toolkit’s media guide as a resource, which includes helpful talking points.
• Support PKU programs and research. Host your own fundraiser or donate to help advance research and resources for the PKU community.
• Bring people together. Organize a local gathering or meetup on Dec. 3.

Awareness Day Events

Planning an event for PKU Awareness Day? Send your event details to [email protected] and we’ll feature it on our website below to help spread the word!

• Dec. 3, 2025 at 6:00pm | Low Protein Pizza Party Blaze Pizza 4522 W. Wendover Ave, Greensboro, NC
• Dec. 3, 2025 at 6:00pm | Low Protein Pizza Party Blaze Pizza 316 Grand Hill Place, Holly Springs, NC
• Dec. 3, 2025 at 6:00pm | Low Protein Pizza Party Brixx Pizza 1343 Broadcloth Street, Fort Mill, SC

About National PKU Alliance | NPKUA.org

National PKU Alliance (NPKUA) is the only national organization dedicated solely to supporting individuals and families affected by phenylketonuria (PKU). NPKUA’s mission is to improve the lives of individuals with PKU, pursue a cure by expanding research and provide education and support to individuals living with PKU and their caregivers.

Since its founding in 2008, NPKUA has been a driving force in advocating for PKU patients, advancing research for innovative treatments and providing support through educational resources, patient programs and community-building initiatives. Through its diverse programming — ranging from the annual Research Grant Program to life stage support kits, Mentor Program and the PKU Patient Registry — NPKUA is making an enduring impact on the PKU community.

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