Contact us
email: info@canpku.orgCanPKU Resources
Resources from CanPKU 2009 Events
75th Anniversary of Discovery of PKU CanPKU - Decouverte de la PCU 2009 75e Anniversaire
A New Era for Treatment of PKU B. Burton - Une Nouvelle ere pour le traitement de la PCU B.Burton
Advances in PKU Treatments J. Vockley
I have PKU and I eat healthy M-H Bourdages - Moi J ai la phenylcetonurie et je mange sante M-H Bourdages
Resources from our Members and Staff
Chapter on PKU in the Metabolic and Molecular Bases of Inherited Disease, editor-in-chief Charles Scriver (PDF format)
Can someone please explain to me what PEG-PAL is and how it works? This question came to us via the PKU community and prompted the following response... (PDF format)
by Christineh N. Sarkissian, John Adams and Alejandra Gámez
My PKU Life
An Autobiography and Informal Guide for People with PKU and their Families
by Carrie C. Hall
Tandem Mass Spectrometry in Newborn Screening
By David S. Millington, PhD
Director, Biochemical Genetics Lab
Pediatrics, Medical Genetics Division, Duke University Medical Center
Passing on the Scale: Transitioning an Infant with PKU into Licensed Childcare (pdf)
By Laura Demchuk Sloan, PhD (Mom of 2 years old CPKU)
PKU and Daycare: MyBaby & PKU (pdf)
By Laura Demchuk Sloan, PhD (Mom of 2 years old CPKU)
Infant Sample Meal Plan – Week 1 (pdf)
By Laura Demchuk Sloan, PhD (Mom of 2 years old CPKU)
Toddler Sample Meal Plan – Week 4 (pdf)
By Laura Demchuk Sloan, PhD (Mom of 2 years old CPKU)
Phenylketonuria: questioning the gospel - 2007
By William B. Hanley, MD, FRCPC
Founder, Honorary Physician & Director Emeritus, PKU Programme, Hospital for Sick Children, Toronto, ON
Project Investigator, The Research Institute at the Hospital for Sick Children, Toronto, ON
Resources from the Metabolic Clinics
Winnipeg Metabolic Clinik Program (PDF format)
Health Canada approved Product Monograph of KUVAN (PDF format)
Nova Scotia IWK Health Centre - Metabolic Winter 2009 Newsleter (PDF format)
IMD product list covered by MOHLTC as of January 2010 (PDF format)
Liste de produits nutritionnels thérapeutiques couverts par le programme alimentaire québécois pour le traitement de maladies métaboliques héréditaires / Quebec Government Metabolic Food List (May 2009) PDF Version
Other Useful Resources
Special Supplement on PKU, Psychology and the Brain in Molecular Genetics and Metabolism (2010)
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NUTRIENT DATA LABORATORY
Search the USDA National Nutrient Database for Standard Reference. Search for food PHE content.
Neurocognitive Outcomes in PKU: It IS Time To Raise the Bar by Dr. Susan Waisbren, PhD
To check all PKU related videos posted in YouTube click here.
PKU support listserve
This listserve is a great place for families and persons living with PKU and professionals to share information, ideas and concerns. It is an easy way for people all over the world to come together and communicate about PKU. It has more than 1,500 subscribers (at October 2009). If you want to join this listserve, send an email request to:
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
In the subject of your message say: subscribe pku-support-l including your full name.
Here is an example: subscribe pku-support-l Jane Doe
You will receive a confirmation by email.
Collection of Newborn Screening Videos Provides Unique Forum for Information Sharing
As part of the Consumer Focused Newborn Screening projects, Genetic Alliance created a playlist on the Genetic Alliance YouTube Channel <http://www.youtube.com/geneticalliance> that showcases a selection of introductory newborn screening videos from various individuals and stakeholder organizations.
Historical Information
IMD product list covered by MOHLTC as of May 2009 (PDF format)
IMD product list covered by MOHLTC as of January 2009 (PDF format)
IMD product list covered by MOHLTC as of May 2008 (PDF format)
Liste de produits nutritionnels thérapeutiques couverts par le programme alimentaire québécois pour le traitement de maladies métaboliques héréditaires / Quebec Government Metabolic Food List (October 2008)
Click here to open PDF Version