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

Goals and Successes

Founded in 2008, CanPKU has been instrumental in helping families achieve a better quality of life by advocating for better access to PKU treatments and resources.  We definitely do not take sole credit for the accomplishments listed below: sometimes we are the driving force, and sometimes we play a small supporting role.  However, we are proud that the following improvements have occurred:

  • 2010 – Patient Organization submission to the Common Drug Review regarding Kuvan
  • 2012 – Low protein food funding started in Saskatchewan
  • 2013 – Kuvan funding started in Saskatchewan and Quebec
  • 2014 – Low protein food funding started in British Columbia
  • 2015 – Low protein food funding for adults started in Manitoba (children already covered)
  • 2015 – Low protein food and extra formula funding for all patients in PEI
  • 2016 – Patient Organization submission to the Common Drug Review regarding Kuvan
  • 2016 – Kuvan funding started by Health Canada for indigenous patients

 

There is more work to do.  Join your voice to others and make our voices heard!  Visit our Advocacy Page for more information.

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