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Work In Progress

What is this page for? We wanted somewhere to provide information to you about things that are currently a work in progress. 

This could be any number of things such as the following

              • An advocacy campaign
              • Getting an approved medication to market
              • Trial information (which is needing "in progress" updates. Please also check the "Trials" tab)
              • Research possibilities
              • CanPKU Outreach
              • You get the idea. (Below we will list them by alphabetical order)

Advocacy

Kuvan - We are currently looking for advocates in SK and ON (primarily, but will accept from nationwide) to help with the continued fight against the regulations regarding Kuvan approval in the province.

Kuvan was approved for use but still not covered in some provinces in Canada

Kuvan Fact Sheet in Canada based on Jan 2023

CanPKU Outreach

Drive to Thrive - We are currently looking for adult patients who are off diet (treatment) in and out of clinics in order to help them with their PKU Journey.

Peer to Peer - We are currently looking for well controlled teens who are within treatment guidelines (at least most of the time) to mentor teens who are struggling with their PKU Journey.

Peer to Peer - We are currently looking for adults who are within treatment guidelines (at least most of the time) to help other adults who are struggling with their PKU Journey.

Medication

Palynziq - CADTH has released their Final Recommendations for use in Canada. (This does not mean the drug is ready to get to the patients. Next steps will still include the price negotiations)

Research

Are you a teen? We have some research projects for teens. Check out the correct tab or go from here.

Nothing more to see here. Do we need an update? Let us know at info@canpku.org

Trials

Nothing to see here. Do we need an update? Let us know at info@canpku.org

....And More

Nothing to see here. Do we need an update? Let us know at info@canpku.org


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Email: info@canpku.org


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