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Advocacy
We work to advance equitable access to diagnosis, treatment, and lifelong care for individuals affected by PKU and allied disorders across Canada.
CanPKU+ engages in non-partisan public policy dialogue and development activities that support our charitable purposes of relieving sickness, advancing education, and advancing health. We work with families, clinicians, policymakers, and system leaders to improve access, equity, and outcomes. Our advocacy is evidence-informed and independent of sponsor influence.
Join Our Advocacy Efforts
Individuals affected by PKU, HCU, MSUD, UCDs and other allied disorders are invited to participate in advocacy discussions and initiatives. To receive updates about advocacy opportunities, update your profile interests and select Advocacy - Plaidoyer.
Update My Interests 
Lived experience strengthens policy solutions.
Focus Areas
Federal
- Access pathways and reimbursement fairness
- Regulatory modernization for medical foods and formulas
- Rare disease strategy implementation
- Disability Tax Credit equity
Provincial and Territorial
We advocate for equitable access to care and funding across provinces and territories, recognizing that access varies significantly by region.
Newborn Screening
We support timely and comprehensive newborn screening, including expanded screening for conditions such as HCU, where medically appropriate.
Current Priority Areas
Advocacy Toolkit
Practical guidance to help individuals communicate effectively with decision-makers. Materials are non-partisan and intended to support informed dialogue.
Access the Toolkit Stories Drive Change
Lived experience helps policymakers and system leaders understand the real-world impact of access barriers, delayed diagnosis, and treatment inequities. Sharing your experience contributes to informed, non-partisan public policy dialogue and supports improved health outcomes.
Upcoming Advocacy Events
Events will appear below.