C | Community
There's room for you here.
Whether you are looking for answers, hoping to meet someone who understands, or ready to join us at an event, you belong in this community. CanPKU+ brings people affected by PKU, HCU, MSUD, urea cycle disorders and allied conditions together across Canada.
Here for you
When to Reach Out to CanPKU+
Whether you're newly diagnosed, looking for someone who understands, navigating a new life stage, or searching for information and opportunities, CanPKU+ is here to help you find connections and possible next steps.
Connect with us when you need:
Community & Connection
Peer connections, family gatherings, youth opportunities and shared experiences.
Education & Resources
Plain-language information, learning opportunities and resources for different life stages.
Advocacy & Navigation
Information about available supports, help identifying barriers and guidance on where to seek assistance.
Practical Information
Information about disability benefits, community programs and resources that may be available.
Events & Experiences
Camps, regional gatherings, webinars and low-protein culinary activities.
Research Engagement
Opportunities to learn about research, share perspectives and participate in patient engagement.
Not sure where to start? Reach out anyway.
We can help explore resources and connections, or point you toward an appropriate next step.
Contact CanPKU+Connect online
Start wherever you feel comfortable. Read and explore in your own time, or join a conversation with others across Canada.
Read up
Find the latest CanPKU+ updates, learn from community members' experiences and discover the many paths people have taken through life with a rare disorder.
News, articles, announcements and updates on topics that affect our community.
Read community members' stories →
Meet people and families living with PKU, HCU, MSUD and UCDs.
If you feel ready, your experience may help someone else feel less alone.
Meet up
Sometimes it helps just to talk with people who get it. Join a relaxed group conversation, or let us know if a one-to-one connection would feel more comfortable.
Come together in person
A friendship can begin with a letter, a conversation over lunch or a day spent learning together.
Low Pro Pen Pals
Send a letter, receive one back and get to know someone who understands life with a low-protein diet.
Ask about Pen Pals →Come Explore
There is something special about being in a room with people who understand. Join us to learn, share a meal, make friends and enjoy time together.
National Events
Our national gatherings bring people together from across Canada. Building Bridges offers opportunities to learn and exchange ideas, while Camp MagniPHEque makes room for friendship, fun and shared experiences.
Building Bridges Camp MagniPHEque
Connect to your clinic
Your clinic is an important part of your circle of support. CanPKU+ works alongside metabolic teams to help you find resources and community.
Find a Clinic & Connect at Clinic Events
Find a metabolic clinic
Looking for a metabolic clinic? Start with our clinic information for locations across Canada.
See you at your clinic event!
We enjoy joining clinic days, information sessions and research awareness events. If CanPKU+ is visiting your clinic, please come say hello.
For Metabolic Clinics: When to Reach Out to CanPKU+
Metabolic teams are important partners in helping individuals and families find trusted information, community and support. We welcome connections from dietitians, physicians, nurses, social workers and other healthcare professionals.
Reach out when your clinic would like to:
- Connect a newly diagnosed individual or family with community resources.
- Help someone explore peer connections, support networks or shared experiences.
- Share educational resources, webinars, events or youth opportunities.
- Find information about advocacy, disability benefits or available programs.
- Collaborate on clinic education days, awareness activities or regional gatherings.
- Share research opportunities or seek patient and family perspectives.
- Discuss barriers affecting people living with PKU, HCU, MSUD, UCDs and allied conditions.
We are happy to explore ways to complement your team's work while keeping medical care and treatment decisions with the appropriate healthcare professionals.
Contact CanPKU+ about Clinic CollaborationStay close to the community
Join CanPKU+, receive updates and choose the opportunities you want to hear about. We would love to keep in touch.
Past events
Take a look back at the places we have gathered and the moments we have shared.
Explore past events →Information on this page is for general education and community support. For individual medical advice, please contact your metabolic clinic or healthcare provider.