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CanPKU+ believes that creating awareness around Phenylketonuria (fen-ul-key-toe-NU-ree-uh) 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.

According to Newborn Screening Ontario the instance of PKU shows up 1 in 12,000 babies. Find more information here

Downloadable Resources for Individuals with PKU or Allied Disorders

Don't forget to link back to GENERAL DOWNLOADS which have over all downloads for you.

You can also check out the resources under the Research and Patient Support Drop down menu.

General Information

2022 - Cambrooke has created a Wellness Journal for those with PKU . It is USA based information but most of it still applies to Canadians. Download it here. It will provide information as well as ways to track your rare. Refill pages for tracking can be downloaded here

With permission from Cambrooke - CanPKU+ printed a number of these wellness journals (with a bit of Canadian flare). If you are a teen or adult who would like a complimentary copy please email to info@canpku.orginfo and request this. We will need your name, email and date of birth. If you would like to purchase a copy, you may do so in our store.

Avec la permission de Cambrooke - CanPKU+ a imprimé un certain nombre de ces revues de bien-être (avec une touche canadienne en francais). Si vous êtes un adolescent ou un adulte qui souhaite un exemplaire gratuit, veuillez envoyer un e-mail à info@canpku.orginfo et en faire la demande. Nous aurons besoin de votre nom, email et date de naissance. Si vous souhaitez acheter une copie, vous pouvez le faire dans notre magasin

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. 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!

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.

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.

Formula Based Information

Nutricia has a Maxamum recipe book available in English and French. You can download it right from here.

Maximum Recipe

3 simple ways to mix in PhenylAde GMP MIX-IN.pdf

Nutricia propose un livre de recettes Maxamum disponible en anglais et en français. Vous pouvez le télécharger directement à partir d'ici.

Recettes Maxamum

3 façons simples de mélanger PhenylAde GMP MIX-IN.pdf


Eating Well

Maternal PKU

2021 - Nutricia - Pregancy Leaflet for Maternal PKU   Grossesse

2021 - Nutricia - Pregnancy Fact Sheet

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


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 - 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'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, 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.

**Discontinued App ** Chronically Simple - 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!

Other PKU Websites

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.

General INformation

What is PKU?

PKU is short for phenylketonuria (pronounced fen’-il-kee’-to-nu’-ria).  PKU is a rare, inherited metabolic disease that results in developmental disability and other neurological problems when treatment is not started within the first two weeks of life.

How is PKU diagnosed?

Every baby born in Canada is supposed to be tested for signs of elevated phenylalanine. This effects about one baby in 12,000 in Canada. The reason for this universal newborn screening for PKU is that a baby with PKU does not show signs or symptoms until after irreversible harm has occurred. The lack of early signs and symptoms means the best mother and father working with the best doctors and nurses do not have a good chance of preventing permanent brain damage. That why we call newborn screening a modern miracle.

Most Canadian babies have been screened for PKU since the 1960s. We do not screen children born in other countries when their families move to Canada.

How often are children with PKU born?

PKU is inherited as an autosomal recessive trait. In other words, two people who conceive a child must both be carriers of the gene in order for there to be a chance that their infant will have PKU.  When two carriers conceive a child, there is a one in four or 25% chance for each pregnancy that the baby will have PKU.

It is estimated that PKU occurs with a frequency of one in 12,000 newborns in North America. This amounts for about 300 new cases each year.  The incidence varies in other parts of the world, it occurs with a frequency of 1 in 4,500 new born babies in Ireland and Turkey, 1 in 10,000 in most of Europe, and 1 in 11,000 in South America.

How can PKU affect a person?

People with PKU are missing an enzyme to break down protein in food, specifically one aminio acid. This amino acid is called phenylalanine, often called PHE (pronounced fee). Since this amino acid cannot be completely processed, it builds up in the blood and excess amounts cross the blood-brain barrier. When excess amounts build up, brain damage and other neurological problems result.

Is it possible to prevent the symptoms?

YES, fortunately, if the child is diagnosed early (before 10 days of age) and treatment is started right away, developmental disability can be prevented. There is a screening program for PKU available for Canadian children, which takes place shortly after birth (newborn screening). All children with PKU have access to treatment. To maintain proper health and development the blood PHE level must be kept in good control throughout the child’s life.

How is PKU treated?

Reduce phenylalanine intake through low PHE diet

Provide necessary alternative to natural protein through œmedical formula  

Periodic monitoring of blood PHE levels

Food Therapy

Most children and adults with PKU must follow a special food therapy. The therapy often referred to as a  "PKU diet"  involves strictly controlling the intake of natural protein (which contains phenylalanine), drinking a synthetic phenylalanine-free protein formula and eating special low-protein food. The synthetic formula and special low-protein foods are expensive, but mostly covered here in Canada. 

The diet for the most severe form of PKU eliminates all of the very high protein foods since all protein contains phenylalanine. This means that all concentrated sources of protein must be eliminated from the diet in order to limit the amount of phenylalanine. The diet does not allow consumption of meat, fish, poultry, milk, eggs, cheese, ice cream, legumes, nuts, or many products containing regular flour.

A synthetic formula is used as a nutritional substitute for the eliminated foods. This formula is very expensive.
The diet is supplemented with special low protein foods and weighed or measured amounts of fruits, vegetables and some grain products. These foods are allowed in quantities that suit the individual child’s tolerance for phenylalanine.


In Canada Kuvan and Palynziq are currently approved for use.

Gene Therapy

Other Information

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