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Community

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

To sign up at this google form: https://forms.gle/2PKqarZCv9rGq8nx9

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.

Sign Up for Low Pro Pen Pals

Advocacy Opportunity

British Columbia PKU community: we need your voice!

British Columbia is seeking input from people living with phenylketonuria (PKU), families and caregivers as part of its review of Sephience™ (sepiapterin) for public drug coverage.

Who can participate:
People living with PKU in British Columbia, along with parents, family members and caregivers who can share their experiences and perspectives.

What to share:
Your lived experience with PKU, challenges with dietary management and current treatments, and what additional treatment options could mean for you or your family. You do not need to have used Sephience to share your perspective.

Why your voice matters:
Your input can help BC decision-makers understand the real-world impact of PKU and the importance of treatment options when considering public drug coverage.

How long does it take?
Allow approximately 30–45 minutes to complete the survey, depending on how detailed your responses are.

Submission deadline: October 27, 2026.

Participation is voluntary. Please share your own experiences and perspectives. We also encourage you to share this opportunity with other BC individuals and families affected by PKU.

Complete the BC Sephience Survey

Advocacy Opportunity

Alberta families: we need your voice.

Following Alberta's first Rare Disease Summit, CanPKU+ is strengthening our Alberta advocacy network so our community is ready to participate in the conversations and opportunities that come next.

Who can get involved:
We want to hear from people in Alberta with lived experience of PKU, HCU, MSUD or a UCD, including individuals living with these conditions, parents, caregivers and family members. No previous advocacy experience is required.

How you might participate:
Share your lived experience, help identify Alberta-specific priorities, review advocacy submissions, participate in meetings, or speak about your experience when opportunities arise.

Your voice at the Summit:
John Adams and Maya Pazouki attended the Alberta Rare Disease Summit on behalf of CanPKU+, helping to bring your voice and the experiences of our PKU, HCU, MSUD and UCD communities to the table.

The Summit opened a conversation about the future of rare disease care in Alberta. We want even more Alberta voices ready for what comes next.

Read the Summit Update Join Alberta Advocacy

Advocacy Update

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 that patient and caregiver perspectives were represented in the process.

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

Read the Recommendation Read the Impact of Our Advocacy

Community Voice

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.

Open Survey

Research

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?
We are looking for people who have previously completed one of our DTC spreadsheets, or who would be willing to complete one for the purposes of this research study.

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

Interested? Complete the short sign-up form to let us know you would be willing to participate. Signing up allows CanPKU+ to contact you with more information about the study.

Sign Up for the DTC Research Study

Research Fundraiser

Where this link takes you:
This link takes you to the CanPKU+ HCU Race for Research donation page, where you can continue to support research focused on Homocystinuria (HCU).

2026 Race for Research - Completed
The 8th Annual HCU Race for Research is now officially closed, with $805 raised by the CanPKU+ community in support of HCU research.

Thank you to everyone who donated, shared the campaign and helped support this year's race.

Want to continue supporting HCU research?
Although the 2026 Race for Research campaign has ended, the dedicated HCU research fund remains open year-round. Donations made through this page will continue to support CanPKU+'s commitment to advancing HCU research.

The HCU Race for Research is an annual HCU Network America fundraiser that collaborates with the CanPKU+ community offers support of that brings families, friends and supporters together to help move Homocystinuria research forward. Melanie Colter, Mom, Board Member and HCU Representative for CanPKU+ assists with the process of selecting the recipients of the funding to advance such research.

Donate to the HCU Research Fund

Upcoming Webinar

Where this link takes you:
This link takes you to the CanPKU+ article about an upcoming free webinar from RareKids-CAN for patients and caregivers.

Why explore it:
Learn more about advanced therapies in pediatric rare disease and what this evolving area of treatment and research may mean for patients and families.

Wednesday, October 14, 2026 | 1:00 PM EDT | Virtual | Free
Presented by Dr. Tamorah Lewis, MD, PhD, Physician Scientist and Division Head for Clinical Pharmacology and Toxicology at The Hospital for Sick Children (SickKids).

CanPKU+ is sharing this opportunity as part of our effort to connect our community with relevant educational programming offered by trusted rare-disease organizations.

Learn More & Register

Education Resource

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:
Heading back to school with a rare metabolic disorder can take a little extra planning. These Back to School Kits from Cambrooke are designed to provide helpful resources and support as students and families prepare for the new school year.

Who is this for?
These kits are intended for those living with Phenylketonuria (PKU), Homocystinuria (HCU), Maple Syrup Urine Disease (MSUD), or Tyrosinemia (TYR). This particular program does not include Urea Cycle Disorders (UCDs).

This resource is offered by Cambrooke. Please review the request form for any eligibility, availability or distribution details.

Request a Back to School Kit

Food & Nutrition

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

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

Product availability, ingredients, nutrition information and suitability may change. Always review the current product information and speak with your metabolic dietitian if you have questions about whether a product is appropriate for your diet.

Explore Tortilla Wrap Recipes

Membership

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.

Join or Renew

Volunteer Opportunity

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

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

Why this matters:
Volunteers are an important part of the sustainability of CanPKU+. They bring lived experience, skills, ideas, energy and capacity that help strengthen our work across Community, Advocacy, Research, Education and Sustain.

What to expect:
Join Tanya for a short online Volunteer Meetup and take a quick tour of the work happening across CanPKU+. You may hear about opportunities involving community connections, advocacy, research, educational resources, food demonstrations, webinars, events, communications, volunteer coordination, fundraising, organization and systems, and more.

You do not need to know where you fit before joining us.
That is exactly what we are hoping to discover.

No preparation is required. You only need to attend one session. At the end, you'll be invited to complete a short form about your interests, how you may like to contribute, and the amount of time or capacity you realistically have.

Choose a Volunteer Meetup:

Sunday, September 27 | 7:00-8:00 PM ET
4 PM PT · 5 PM MT · 6 PM CT · 7 PM ET · 8 PM AT · 8:30 PM NT

Join September 27 Meetup

Tuesday, September 29 | 6:00-7:00 PM ET
3 PM PT · 4 PM MT · 5 PM CT · 6 PM ET · 7 PM AT · 7:30 PM NT

Join September 29 Meetup

Saturday, October 3 | 2:00-3:00 PM ET
11 AM PT · 12 PM MT · 1 PM CT · 2 PM ET · 3 PM AT · 3:30 PM NT

Join October 3 Meetup

This first step is simply about finding our people. We want to understand who is interested, what they are interested in, and where there may be a natural fit.

Information

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.

If a link or QR code is no longer active, this page may still point you to the closest current resource or explain where to go next.