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

General Information

2021 - CanPKU Brochure about PKU - With the help of our PKU Community sharing their photos and locations - we were able to create a new CanPKU Brochure. This highlights the basics of PKU and CanPKU. Printed copies are available by request. We appreciate any donations to assist with the cost of mailing.

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!

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.

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

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

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.

Infancy

Toddler

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 in english for us to share with you!

L'enfant PCU a l'ecole et garderie handout Vitalite (NewBrunswick)  FRANCAIS 

School Aged

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.

PKU Food Pyramid

Teens

Maternal PKU

2021 - Nutricia - Pregancy Leaflet for Maternal PKU

2011 - My PKU Binder Chapter 9 PKU and Pregnancy - This chapter specifically deals with Maternal PKU. The binder has been prepared by NPKUA

Return to Therapy (care/diet) and Diet for Life

Awareness

Region or Province Based

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.

Apps to help you manage your PKU

How Much Phe - https://howmuchphe.org/ to help take the guess work out of your daily phe or protein intake.  How Much Phe is an online subscription service which provides access to the Phe content of foods as contained in the Low Protein Food List for PKU and PKUNews.org's Baby Food List. The site is a service of National PKU News.  The revenue from How Much Phe is used to support development of features and foods for HowMuchPhe.org, and PKU News' and general operations. CanPKU offers a discount voucher for members, please reach out if you would like one. Scholarships are also available by applying directly to How Much Phe, if needed.

Chronically Simple - https://www.chronicallysimple.com/ is a subscription based cloud program that allows you to track all medical needs from doctors and appointments to keeping track of your documents and lab results. This program can be used for yourself and or those you care of (Children, Parents etc). This is a continually evolving platform designed by someone who lives in the rare disease world herself. Every addition to the platform has come from other patients and their needs. They are currently expanding into assisting PKU specifically. If you would like lifetime access to this platform at the premium level - Please reach out to us to obtain a code to override the fees and learn how you can help!

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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Toronto, ON, M5A 1N1, Canada
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Email: info@canpku.org


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