Welcome to Canadian PKU & Allied Disorders
We help your children
Healthy children
1 in 12,000 newborns
Adults with PKU
We Are Not PKU

Advocacy Successes

Our voices have been heard! The following is a list of ways that CanPKU, patients and families have come together to encourage change.



  • Thank You letter from the CADTH Common Drug Review Program – 2017
  • Averting a crisis in 2003 when Ontario wanted to take formulas away from adult patients.  This was before CanPKU existed but was the impetus for the formation of the organization
  • Patient submissions to the Common Drug Review re Kuvan in 2010 & 2016
  • Funding of low protein foods by Saskatchewan – 2012
  • Funding of Kuvan by Ontario, Saskatchewan & Quebec – 2013
  • Funding of low protein foods by BC – 2014
  • Funding of low protein foods for adults by Manitoba – 2015
  • children already covered
  • Funding of low protein foods and extra formulas in PEI – 2015
  • Funding of Kuvan for indigenous patients by Health Canada – 2016

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