Online Resources

There are many online resources, but some are better than others.  What you don’t need is wrong or misleading information.  We’ve compiled this list of websites that we hope you will find useful now and over the years. 

We strive to make our own website full of good information… Because Knowledge Leads to Better Health.   www.canpku.org 

Patient Support

Facebook:  CanPKU:  www.facebook.com/groups/27044031548/ 

                     Parent Group for Toronto SickKids:  www.facebook.com/groups/378552368862471/

      Worldwide PKU Support:  www.facebook.com/groups/PKUworldwidesupport/

Adult PKU Support: https://www.facebook.com/groups/AdultPKUSupport/

PKU Listserv:  A worldwide support network for patients, friends and families affected by PKU personally.  Email 

macpku@verizon.net with your name to request membership (free).

PKU.com:  A support website hosted by BioMarin:  www.pku.com

Worldwide forum: for talking to other families affected by PKU:  www.pkuworld.org/forum

PKU Connect:  a place for patients and families to connect and share recipes, advice, information about reimbursement and more:  www.pkuconnect.com

Food Vendors, Recipes and Information

Dietary Specialties:  www.dietspec.com  Low protein food products for purchase

Ener-G Foods:  www.ener-g.com  Low protein food products for purchase

PKU Perspectives:  www.pkuperspectives.com   Low protein food products for purchase – Receive a 5% discount on Country Sunrise brand products with CanPKU membership!

Taste Connections:  www.tasteconnections.com  Low protein food products for purchase and recipes

Cook For Love:  www.cookforlove.org  Recipes tailored to the PKU diet

Minnesota PKU Foundation:  www.mnpku.org/dietrecipe  Recipes, tips and helpful hints

Lil’s Dietary Specialty Shop:  www.lilsdietary.com  Low protein food products for purchase

SELF Nutrition Data:  http://nutritiondata.self.com/facts/vegetables-and-vegetable-products/2401/2  

This resources gives detailed nutritional information, including phe content for most natural foods (be sure to click on the ‘more details’ option under “Protein & Amino Acids”)  

Health Canada, Canadian Nutrient File:  http://webprod3.hc-sc.gc.ca/cnf-fce/index-eng.jsp

US Department of Agriculture, Nutrient Data Laboratory:  http://ndb.nal.usda.gov/ndb/foods/list

Taranis:http://www.taranis-nutrition.com – Low protein food vendor in France with recipes in English and French

How Much Phe:  https://howmuchphe.org/A comprehensive diet-management system for PKU with phe/pro/exchange and calorie values for more than 7,000 foods.

General Information

National PKU Alliance (USA):  www.npkua.org.   

NORD (National Organization for Rare Diseases):  www.rarediseases.org 

CORD (Canadian Organization for Rare Disorders):  www.raredisorders.ca

PKU News:  www.pkunews.org offers the PKU Food List for purchase and updates, a newsletter and other PKU  related books for sale.  Receive a free newsletter with CanPKU membership!

My PKU Toolkit:  www.myPKUtoolkit.com.  Created by Applied Nutrition and Children’s Hospital Boston.  Includes  diet tips and model forms for self- management and advocacy for downloading.

Cold Spring Harbour Laboratory:  www.ygyh.org –explanations and illustrations of the genetics, incidences, inheritance, symptoms, testing/screening, living with the condition and treatment.

ORPHANET – Canadian entry point: www.orpha.net/national/CA-FR/index/page-d-accueil/ – International  Reference Portal on Rare Diseases and Orphan Drugs (multilingual)

ESPKU (European Society for Phenylketonuria and Allied Disorders): http://espku.espku.org – Organisation of  about 23 national and regional associations from 23 countries established by parents whose main activity  is an annual conference. Mostly in English with sections in 5 other languages.

Living with a genetic disorder:http://www.nature.ca/genome/03/d/10/03d_14c_e.cfm - Part of Genome Canada  web site. From a testimony, this page explains the disorder and its impact on the everyday life a PKUer. 

The site also contains several games on genetics for children and teens (in English and French)

Sponsors

We sincerely thank all our sponsors for their continued financial support.

BioMarin Pharmaceuticals Inc.http://www.bmrn.com/ - provides breakthrough treatments to patients around the world suffering from rare genetic diseases, including Kuvan and PEG-PAL for PKU.

PTC Therapeutics - Currently in trial for a pharmaceutical for PKU

Synlogic - Currently in trial for a pharmaceutical for PKU

Homology - Currently in trial for Gene Editing for PKU

Cambrooke Foods http://www.cambrookefoods.com - is dedicated exclusively to providing innovative clinical nutrition products.

Nutricia North Americahttp://www.nutricia-na.com/ - a wide variety of FDA and Health Canada approved products used in the management of inherited metabolic diseases, including PKU, as well as other conditions requiring advanced medical nutrition for specialized care.  

Vitaflo USAhttp://www.vitaflousa.com - dedicated to serving the metabolic community through innovative and specialized formulas for the treatment of rare metabolic disorders and disease related malnutrition.

Specialty Food Shophttps://www.specialtyfoodshop.com - the specialized food store at the Hospital for Sick Children, in Toronto, offers online shopping for specialty foods and will ship anywhere in Canada.