National PKU Alliance

National PKU Alliance PKU is a rare genetic disorder. People with PKU cannot process phenylalanine found in all protein.

The NPKUA's mission is to improve the lives of individuals with PKU and pursue a cure.

08/20/2026

Summer recap with !

Nicole has been having a lot of exciting adventures this summer. After switching to PKU sphere® liquid in May, she was kind enough to share this updated PKU formula review and show us how it has been fitting into her life.

Some key features that are working for her include:
-20 g of protein equivalent in one 8 oz bottle
-Low in added sugar at just 1 tsp per bottle
-Actually tastes good :-D

If you're looking for new PKU formula ideas that are travel-friendly, hiking-friendly and fit into a life on the go, this is the PKU sphere review you need to watch.


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Use under medical supervision.
Be sure to check with your healthcare professional before making changes to your diet.

There's something so powerful about being in a room with people who just get it. That's what our Community Conference is...
08/18/2026

There's something so powerful about being in a room with people who just get it. That's what our Community Conference is all about!

During our conference in July, we held a closed breakout session just for adults with PKU. This group came together for real talk, real advice and the kind of connection that's hard to find anywhere else.

Together, they created a virtual Wall of Wisdom you can revisit anytime. Take a look here: https://bit.ly/3UEBg5g

This support and connection doesn't end at the conference! We invite you to join our virtual Community Calls, held monthly for anyone who wants to learn, share or simply connect with others who understand: npkua.org/support/

This National Nonprofit Day, swipe to learn a bit about us! ➡️Our mission is to improve the lives of individuals with PK...
08/17/2026

This National Nonprofit Day, swipe to learn a bit about us! ➡️

Our 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 our founding in 2008, NPKUA has been a driving force in advocating for people with PKU, advancing research and providing educational resources, support programs and community-building initiatives.

To the individuals, families, caregivers, donors, volunteers, advocates and sponsors who stand beside us every day, thank you for being part of NPKUA and helping move our mission forward!

Visit npkua.org/support to register for this week's community call!
08/17/2026

Visit npkua.org/support to register for this week's community call!

Did you know you can turn your favorite hobby into a fundraising opportunity?🤗With our DIY fundraising page, YOU get to ...
08/15/2026

Did you know you can turn your favorite hobby into a fundraising opportunity?🤗

With our DIY fundraising page, YOU get to decide how you'd like to participate!

Let's brainstorm...

👟This fall, plan a walk or run on a beautiful fall day!
⛳Share your passion for PKU with your local course and get a date on the calendar.
🎾Pickle or tennis? You get to decide and bring your crew to the courts!
🀄Mahjong everywhere. You know who you are...and your group would LOVE another reason to play!

👉 Ready to learn more? Visit https://bit.ly/4tziAkx

It's easy to set up and personalize, set a goal and share with your friends and family. As always, we'll help along the way.🤝

Start your fundraiser anytime and join us in our effort to improve the lives of all individuals living with PKU.

Shout-out to one of our Living Our Best PKU Life Platinum sponsors, PTC Therapeutics, for bringing so many fun experienc...
08/14/2026

Shout-out to one of our Living Our Best PKU Life Platinum sponsors, PTC Therapeutics, for bringing so many fun experiences to our Community Conference weekend! 🍧

From the Kona Ice truck and 360 Video Booth to sponsoring our Thursday night Welcome Reception and Saturday night Celebration Dinner & Dance Party, PTC helped make the weekend extra memorable.

We had so much fun and are so grateful for their continued support of NPKUA and our PKU community!

📖 "Our Friend has PKU" e-book is now available in 7 languages!Whether you're a parent, sibling, classmate, or friend of ...
08/13/2026

📖 "Our Friend has PKU" e-book is now available in 7 languages!

Whether you're a parent, sibling, classmate, or friend of someone living with PKU, this resource is designed to help explain PKU in a way that's simple, warm and easy to understand.

🌍 This e-book is available in English, Spanish, Danish, French, Portuguese, Arabic and Turkish.

👉 Download the e-books here: https://bit.ly/4bLQuLK

What other languages would be helpful to you or your community? Let us know in the comments or reach out to [email protected].

Do you have a child starting Kindergarten this fall? ✏️ 🎒NPKUA Kindergarten Kits are available to request for free for c...
08/12/2026

Do you have a child starting Kindergarten this fall? ✏️ 🎒

NPKUA Kindergarten Kits are available to request for free for children with PKU. Each kit includes fun items for your child, a storybook for peer education and other helpful tools and PKU resources to support caregivers and their children as they begin their educational journey.

Request a Support Kit: https://bit.ly/3IgRY4M

*NPKUA Kindergarten Kits are available for children currently in or entering kindergarten during the 2026-2027 school year. Please allow up to three weeks for your kit to arrive.

Fifty-seven speakers and panelists traveled from near and far to help make last month’s community conference unforgettab...
08/10/2026

Fifty-seven speakers and panelists traveled from near and far to help make last month’s community conference unforgettable. They generously volunteered their time, sharing their PKU journeys, experiences and expertise with our community.

Whether they led a session, joined a panel or hosted a breakout, each played a special role in helping our community leave feeling more informed, more connected and more inspired. 🎤

Thank you to all of our incredible speakers and panelists for being part of such a meaningful weekend!

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2014 Electric Road, #212
Roanoke, VA
24018

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