Canadian PKU and Allied Disorders - Can PKU+

05/16/2026

🌟 Families of children with PKU — we need your help! 🌟
The PKU Registry is growing, and your family’s experience can make a real difference. By joining, you help researchers, clinicians, and community organizations better understand life with PKU — so we can continue improving care, treatments, and support for all kids.
🎥 Watch this short video to learn what the Registry is, why it matters, and how simple it is to participate. https://youtu.be/vSQF8dfuyY8
💛 Every family who joins contributes to a stronger future for our PKU community. 💛 Your child’s story can help shape tomorrow’s research and resources. 💛 Participation is voluntary, confidential, and incredibly valuable.
If you have a child with PKU, please take a moment to watch the video and consider joining the PKU Registry. Together, we can make a difference for every PKU kid—today and in the future. 💛

05/16/2026

🌟 Familles d’enfants vivant avec la PKU — nous avons besoin de vous ! 🌟
Le Registre PCU grandit, et l’expérience de votre famille peut réellement faire une différence. En y participant, vous aidez les chercheurs, les cliniciens et les organismes communautaires à mieux comprendre la vie avec la PCU — afin d’améliorer les soins, les traitements et le soutien pour tous les enfants.
🎥 Regardez cette courte vidéo pour découvrir ce qu’est le Registre, pourquoi il est important et à quel point il est simple d’y participer. https://youtu.be/vSQF8dfuyY8
💛 Chaque famille qui se joint au Registre contribue à un avenir plus fort pour notre communauté PCU. 💛 L’histoire de votre enfant peut aider à orienter la recherche et les ressources de demain. 💛 La participation est volontaire, confidentielle et extrêmement précieuse.
Si vous avez un enfant vivant avec la PCU, prenez un moment pour regarder la vidéo et envisager de vous joindre au Registre PCU. Ensemble, nous pouvons faire une différence pour tous les enfants PKU — aujourd’hui et pour l’avenir. 💛

05/14/2026

How many squares can you check off on our PKU Bingo card?

Screenshot the card, mark off your squares, and share your results with us! We’d love to see who gets BINGO first 👀

Tag us in your stories/posts and use and to join the conversation.

05/10/2026

Happy Mother’s Day from all of us at CanPKU+. 🌸

To the mothers in our PKU community — thank you for your strength, advocacy, compassion, and endless love. Today we celebrate everything you do, seen and unseen.

05/06/2026

Only 30 days to go until our Building Bridges Conference in Montreal! 🇨🇦✨

We’re so excited to bring together the PKU community for a weekend of connection, learning, and support. Whether you’re living with PKU, caring for someone who is, or part of the broader community—this event is for you.

Don’t miss your chance to be part of it—registration is still open, but time is running out!

🔗 Secure your spot today and join us as we build stronger bridges together.

05/04/2026

PKU Awareness Month 💙

PKU may be rare, but for those living with it, it’s part of everyday life. From newborn screening to lifelong management, awareness and understanding make all the difference.

This month, we’re sharing a few key facts to help shine a light on PKU — what it is, how it’s managed, and why early detection matters.

Together, we can build a more informed, supportive community 💙

05/04/2026

05/04/2026

PKU Awareness Month 💙

PKU may be rare, but for those living with it, it’s part of everyday life. From newborn screening to lifelong management, awareness and understanding make all the difference.

This month, we’re sharing a few key facts to help shine a light on PKU — what it is, how it’s managed, and why early detection matters.

Together, we can build a more informed, supportive community 💙

05/03/2026

https://www.facebook.com/share/v/1JQoPx475W/

05/02/2026

Message from the Canadian Rare Disease Network (CRDN):
Know a young person living with a diagnosed or suspected rare disease who is pursuing post-secondary education in Fall 2026? The Canadian Rare Disease Network (CRDN) RAREvolution Scholarship is now open and accepting applications till June 12.
Help us spread the word. Apply now: https://canadianrdn.ca/scholarship/

05/01/2026

We recently saw a question in another group that really resonated — how do you and your family handle comments, reactions, or even ignorance around foods that look different (like low-protein foods)?

We know this comes up often, whether it’s at school, with friends, or even within extended family.

Tanya Chute, President of CanPKU+, shared something her family uses: 💬 “Don’t yuck my yum.” In their home, no one is allowed to put down someone else’s food. You can say you don’t like something — but you don’t label it as “gross” for everyone.

It’s a simple rule, but a powerful one.

We’d love to hear from you — what does your family do? How do you handle these moments, especially with kids, school settings, or social situations?

Let’s share ideas and support each other 💙