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
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
firstname.lastname@example.org 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.
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)
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.