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Home
How to use the website videos
Membership
Update your profile
Community Stories
Make a Donation
Covid-19
Français (PCU)
Ressources en ligne
CRÉDIT D’IMPÔT POUR PERSONNES HANDICAPÉES (CIPH)
Le désir de s’épanouir
About CanPKU+
More About CanPKU
Goals and Successes
Affiliations
ARTICLES OF INCORPORATION, CONTINUANCE, AND BYLAW
Board Members and Management
Annual General Meetings
Sponsors
Not for Profit Vs Registered Charity
Events, Education, Patient Supports.
Our Allied Disorders in Canada
General and by Disorder Downloads
Stages of Life
Infancy
Toddler
School Aged
Pregnancy
Teens
Adults
Topics of Interest
Anxiety
Eating Well
Executive Function
Living with Rare
Mental Health
Need to Talk
Returning to Therapy
Siblings
The Science
Your Protein Restricted Rare
Phenylketonuria(PKU) resources - PCU ressources
Homocystinuria (HCU) Resources -HCU ressources
Maple Syrup Urine Disorder (MSUD) Resources - Leucinose Ressources
TYR1 resources - HT-1 ressources
Methylmalonic Acidemia & Propionic Acidemia (MMA/PA) Resources (AMM/AP)ressources
Isovaleric Acidemia (IVA) Resources -Acidémie isovalérique (IVA) ressources
Fatty Acid Oxidation Disorders
Urea Cycle Disorder
Events
Photos of Past Events
2023 BC Yukon
2023 Quebec Regional
2023 Camp MagniPHEque - Prairies
2023 Ontario Regional Event
2023 Atlantic Regional
Travel Scholarship/Demande de bourse de voyage
Programs
Drive to Thrive - Le désir de s’épanouir
Starter Kits Plus
Links
Books about Rare
Online Resources
Fundraising
Spare For Rare - Bowling Fundraiser
Flip Give
Past Newsletters
Recipes
Disability Tax Credit
Research and Trials
Research
Newborn Screening
Genetic Testing
ACMG Guidelines for PKU
Teens
For Adults
Clinical Trials
PKU Trials
HCU Trials
MSUD Trials
TYR Trials
Advocacy
CanPKU+ in the News
CDR Submission for Kuvan
Need for Advocacy
Drug Development
MEMBERS ONLY AREA
STORE
LINKS
2021 © Copyright CanPKU.ORG
General Interest
C.O.R.D. – Canadian Organization for Rare Disorders
LHSC Medical Genetics for Children
Canadian Directory of Genetic Support Groups
The Garrod Association
Genetic Alliance
Your Genes / Your Health – A multimedia quide to genetic disorders
N.O.R.D. – National Organization for Rare Disorders (USA)
ORPHANET – The portal for rare diseases and orphan drugs
G.M.D.I. – Genetic Metabolic Dietitians International
March of Dimes
Cord Blood Banking
OMIM (Online Mendelian Inheritance in Man)
Eurordis – European Organisation for Rare Disorders
Cognitive Connections (Helping with Executive Function, Time Management, etc)
Making Social Learning Stick
PKU and BH4
2016 PKU Scientific Update Youtube Channel
, by the Dutch PKU Patient organisation
Special Supplement on PKU, Psychology and the Brain in Molecular Genetics and Metabolism (2010)
PKU World
Cook for Love
Specialty Food Shop – The Hospital for Sick Children
US National PKU Alliance (NPKUA)
Phenylketonuria: What is it?
UK NSPKU – National Society for PKU
Children’s PKU Network
National PKU News
Mid-Atlantic Connection for PKU and Allied Disorders
PKU.com – Information on PKU and an active discussion board where you can connect with others with PKU
E.S.PKU – European Society for Phenylketonuria and Allied Disorders
PCU – La phenylcetonurie
Phenylcetonurie (PCU) – French detailed information about PKU or as they call it ‘PCU’
BH4.org – Everything about BH4 or Tetrahydrobiopterin
ASPKUCYL – ASOCIACION CASTELLANO LEONESA DE PKU Y OTM (Spain)
A.P.M.M.C. – Associazione Prevenzione Malattie Metaboliche Congenite (Italia)
DIG-PKU – Deutsche Interessengemeinschaft PKU und verwandte Stoffwechselstrungen e.V. (Germany)
Japan PKU Net (Japanese only)
APEP – Association de parents d’enfants phenylcetonuriques (Switzerland)
Schweizerische Interessengemeinschaft Phenylketonurie und andere mit Eiweisseinschrankungen behandelte Stoffwechselstrungen (Switzerland)
PKU Board
Allied Disorders
Canadian Association for Tay-Sachs and Allied Diseases
Canadian Society for Mucopolysaccharide & Related Diseases
CDG Family Network (Congenital Disorders of Glycoslyation)
Fabry Society of Canada
La Groupe d’Aide aux Enfants Tyrosinemiques du Quebec
Sickle Cell Association of Ontario
Sickle Cell Association of Alberta
Thalassemia Foundation of Canada
Congenital Hyperthyroidism – Thyroid Foundation of Canada
FOD – Fatty Oxidation Disorders Family Support Group
Maple Syrup Urine Disease (MSUD) – The Maple Syrup Urine Disease Support Group
National Niemann-Pick Disease Foundation
National Tay Sachs and Allied Disorders
Organic Acidemia Association
United Leukodystrophy Foundation
CLIMB (Children Living with Inherited Metabolic Diseases)
UK NICMD – National Information Centre for Metabolic Diseases
MedlinePlus – Metabolic Disorders
National Institutes of Health (NIH) – Metabolic Disorders
Newborn Screening
Save Babies Through Screening Foundation of Canada (SBTSFC)
BC New Born Screening Program
Newborn Screening Ontario
Ontario Newborn Screening Program
Programme quebecois de depistage neonatal sanguin
Programme quebecois de depistage neonatal urinaire
National Newborn Screening and Genetics Resource Center – NNSGRC (USA)
NNSIS: National Newborn Screening Information System (USA)
Expanded Newborn Screening using Mass Spec
Save Babies Through Screening (USA)
International Society for Neonatal Screening
MedlinePlus – Newborn Screening
CONTACT US
260 Adelaide Street East, #180
Toronto, ON, M5A 1N1, Canada
Toll Free: 1-877-226-7581
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