Thanks for clicking on a CanPKU+ Social Link

Looking for a Low Pro Pen Pal?

Whether you're looking to make a new friend, share experiences, celebrate milestones, or simply brighten someone's mailbox, Low Pro Pen Pals is a fun way to connect with others in the Amino Allies community, one letter at a time.

For more information: Click Here

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.

Positive reimbursement recommendation for Loargys®

CDA-AMC has issued a final recommendation that Loargys® (pegzilarginase) be reimbursed with conditions for eligible patients living with Arginase 1 Deficiency (ARG1-D).

CanPKU+ community voice:
CanPKU+ participated in the reimbursement review by submitting patient-group input and providing feedback on the draft recommendation, helping ensure patient and caregiver perspectives were represented.

A positive CDA-AMC recommendation is an important step in the reimbursement process. Public coverage remains subject to further negotiations and decisions by participating drug plans.

Where this link takes you:
This link opens a short CanPKU+ survey about how changes to metabolic foods, formula, availability, product decisions or company communication affect individuals and families.

Why complete it:
Your feedback helps CanPKU+ identify common themes and real-life impacts that may be shared in advocacy letters, policy discussions, reimbursement submissions and meetings with decision-makers.

We use community input to help explain why access, stability, choice and communication matter.

Participation is voluntary. Please do not include personal medical details you do not want shared. CanPKU+ may summarize themes from responses but will not intentionally identify you without permission.

Where this link takes you:
This link takes you to a short CanPKU+ sign-up form for an upcoming research study looking at the experience and burden involved in completing the Disability Tax Credit (DTC) process.

Who are we looking for?
People who have previously completed one of our DTC spreadsheets, or who would be willing to complete one for the purposes of the study.

Why participate?
Your experience can help us better understand the time, work and challenges involved in completing the DTC process and build evidence for future advocacy.

Signing up allows CanPKU+ to contact you with more information about the study.

Where this link takes you:
This link takes you to the request form for Cambrooke's Back to School Kits for individuals and families living with PKU, HCU, MSUD or TYR.

Why request a kit:
These kits are designed to provide resources and support as students and families prepare for the school year.

This particular program does not include Urea Cycle Disorders (UCDs). Please check eligibility, availability and distribution details.

Where this link takes you:
This link takes you to Cambrooke's collection of low-protein recipes, including ideas for using Tortilla Wraps.

Why explore it:
Cambrooke Tortilla Wraps are back in stock. Explore tacos, mini pizzas, quesadillas, wraps, crepes, school lunches, snacks and easy family meals.

Product availability, ingredients, nutrition information and suitability may change. Always review current product information and consult your metabolic dietitian as appropriate.

Where this link takes you:
This link takes you to the CanPKU+ membership page.

Why join or renew:
Membership helps CanPKU+ stay connected with the community, share updates, support programming and strengthen our ability to represent lived experience in advocacy, education, research and support initiatives.

We're looking for people who want to become more involved.

There is a lot happening across CanPKU+, and we know there are people who would like to help but may not know where they fit or what opportunities exist.

Why this matters:
Volunteers bring lived experience, skills, ideas, energy and capacity that strengthen our work across Community, Advocacy, Research, Education and Sustain.

Ways to contribute:
Community connections, advocacy, research, educational resources, food demonstrations, webinars, events, communications, fundraising, volunteer coordination and more.

You do not need to know where you fit before reaching out.

We welcome conversations about your interests, skills and the time you realistically have available.

CanPKU+ may use QR codes or short links on social media posts, printed materials, event slides, clinic handouts, postcards and community updates.

These links are meant to make it easier to find the right information quickly.

Current opportunities are organized under Webinars & Events and our five CARES pillars.

Looking for an older link?
Visit Past Social Links for selected completed webinars, closed consultations and previous community activities.

Archived items are provided for reference. Registration links, surveys and deadlines associated with past opportunities may no longer be active.