Awareness

CanPKU believes that creating awareness around PKU and other rare diseases helps patients…Because Knowledge Leads to Better Health.

When people are aware of a condition, they are more likely to be understanding and supportive.  This might be as simple as ensuring that there are appropriate food choices at the next party your child attends, or it might mean that a politician will fight on your behalf for coverage of treatments.

Downloadable Resources for Individuals with PKU or Allied Disorders

MyBaby & PKU by Laura Demchuk Sloan, PhD - A resource developed for child care providers.

Passing on the Scale: Transitioning an Infant with PKU into Licensed Childcare By Laura Demchuk Sloan, PhD - is a description of Laura Demchuk Sloan’s process of preparing for daycare that you may also find useful.

Vitalite (NewBrunswick) has also shared their daycare and school package for us to share with you!

The ABCs of PKU was developed by Nicole Pallone when her PKU daughter was entering public school.  This 8-page summary of PKU is everything a teacher, daycare provider or babysitter needs to know about PKU, including a final page for you to personalize with your specific information.

Created in 2010, the 2010 Food Price Comparison Chart   illustrates the high cost of the modified low protein foods that are required for management of PKU and other Inborn Errors of Metabolism.  It has been useful in many campaigns with provinces, states and insurance companies for coverage of these necessary products.

Created in 2012, this is a general Fact Sheet for PKU. This can be used in awareness and advocacy as well as a simply a great resource on the topic. PCU Fiche d'information en francais.

2015-Phe-Cheat-Sheet.pdf - The Pallone family share their log of foods to help display how they managed their foods in an effort to help you!

2011-NPKUA-Binder.pdf My PKU Binder - A binder to help with the who, why, how of PKU from birth onward.

2012-Blood-Dot-Collection-Instructions.pdf Helpsheet for collecting your blood spot.

2013-BC-Patients-Travel-Cost-Assistance.pdf We have compiled this list of resources so that any BC PKU families who have trouble with the cost of traveling to clinic know where to turn for assistance. 

How does PKU life vary across the provinces?  Health care is actually a provincial responsibility, so where you live determines how easy or hard it is to access what you need to live successfully with PKU.  We developed this 2016 Canada PKU Coverage Report Card to provide a summary of the differences experienced across the country, and it has been useful in many different advocacy campaigns.

Resources Created for a Government Advocacy Blast.

You will noticed these items have a province two letter code at the end. These can be used by any province - however they were set up for the code showing. Simply change your to your local information.

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