Canadian PKU and Allied Disorders - Can PKU+

08/10/2026

We may be a day late, but the birthday wishes are just as big!
Please join us in wishing a very Happy Belated Birthday to Barb, CanPKU+’s wonderful Nutritional Advisor! 🧡🩷💙

Barb brings so much knowledge, care and dedication to our community, and we’re incredibly grateful to have her as part of CanPKU+.
We hope your birthday was filled with plenty of reasons to celebrate, Barb!

08/10/2026

LOW PRO PEN PALS!
Would you or your child like to connect with someone else living with PKU, HCU, MSUD, or a Urea Cycle Disorder?

Whether you're looking to make a new friend, share experiences, celebrate milestones, or simply brighten someone's mailbox, Low Pro PenPals is a fun way to connect with others in the Amino Allies community - one letter at a time.
To sign up, send us: Recipients Name, Mailing address, Birthday and which rare disorder you live with (If you're open to being matched with someone living with a different Amino Allies disorder, let us know too!)
For participants under 18, please include a parent or guardian's name.
Email to [email protected] with subject line "Low Pro Pen Pals"
We'll do our best to match you with a pen pal based on age, interests, and availability.
💌 Because sometimes the best friendships begin with a letter.

08/06/2026

07/28/2026

Your Voice, Our Advocacy is a CanPKU+ mini-series showing how community experiences help shape advocacy work. From treatment access and newborn screening to food, formula, disability supports, and research priorities, we listen to what families and individuals share, identify common themes, and bring those concerns forward to decision-makers. We do not put words in anyone’s mouth. We help make sure lived experience is not left out of the conversation.

Check out the Article here that outlines our feedback to the CDA on the medication Loargys (pegzilarginase) for use in arginase 1 deficiency (ARG-1 a Urea Cycle Disorder)

07/22/2026

Formula and low-protein foods are part of care. If changes, discontinuations, or access issues have affected your daily life, treatment, meal planning, or health management, please share your experience with CanPKU+.
Survey link: https://docs.google.com/forms/d/e/1FAIpQLSeJRVlTVZ2wLpZADf5JoFk6YNhzY_SpfC04_wTs8EazsUYZMg/viewform?usp=sharing&ouid=105449546319653267919

07/21/2026

LAST CALL: 24 Hours Left

Early bird registration for Camp MagniPHEque 2026 closes in 24 hours.

If you are planning to join us, now is the time to register and take advantage of early bird pricing. Travel scholarship requests are also due within the same deadline.

Camp MagniPHEque is a special opportunity for families, youth, adults, and caregivers living with PKU and allied disorders to connect, learn, and enjoy time together in a supportive community setting.

Register and purchase tickets: https://www.zeffy.com/en-CA/ticketing/camp-magnipheque--2026

Apply for a travel scholarship: https://docs.google.com/forms/d/e/1FAIpQLSdB7GVw3DH9dihJmfbsoNZ35DUNbwfqE7dZkum6UgC8Au9Drw/viewform?usp=header

Don’t miss your chance. Early bird pricing and scholarship applications close in 24 hours.

07/21/2026

Decisions to discontinue, change, reformulate, or limit access to medical formula and low-protein foods can have a significant impact on individuals and families managing PKU, HCU, MSUD, UCDs, and related inherited metabolic disorders.
CanPKU+ wants to hear from you.

Please let us know how these decisions affect your daily life, treatment, meal planning, nutrition, health management, routines, stress, costs, school, work, travel, and overall quality of life.

Your experiences help us advocate for better communication, access, and consideration of patient needs when companies make decisions about formula and low-protein food products.

Have your say here: https://docs.google.com/forms/d/e/1FAIpQLSeJRVlTVZ2wLpZADf5JoFk6YNhzY_SpfC04_wTs8EazsUYZMg/viewform?usp=sharing&ouid=105449546319653267919

These products are not optional. For many, they are an essential part of treatment and daily health management.

07/20/2026

Story Time When Were You Diagnosed with Homocystinuria ?

What's Your Story ?

Story & Photos Welcome

07/17/2026

Calling all CanPKU+ home bakers! 🎂
We need your help!
Finding the perfect low protein birthday cake recipe can feel overwhelming especially when you're planning that very first birthday after a rare disease diagnosis. Every parent wants to celebrate those special milestones, and having recipes that are both delicious and beautiful can make all the difference.
If you've baked a birthday cake for someone with PKU, MSUD, HCU or UCDs we'd love to see it!
✨ Share in the comments:
🎂 Your favourite low protein birthday cake recipe (or a link to it)
📸 A photo of your decorated birthday cake
💡 Any tips or tricks that made it a success

07/15/2026

PKU Research Update: A new investigational therapy for phenylketonuria (PKU) continues to move forward as Maze Therapeutics advances its Phase 2 clinical trial evaluating MZE782, an oral treatment designed to lower blood phenylalanine, commonly called Phe, through a novel mechanism.
Although MZE782 remains in the research stage, the study is another encouraging indication that the PKU treatment pipeline continues to expand, with researchers exploring a growing range of approaches that may provide additional options in the future.

For more information find the full research article on our website! 🔬

https://canpku.org/index.cfm?fuseaction=Feature.showFeature&CategoryID=45&FeatureID=43