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Home
How to use the website videos
Membership
Update your profile
Community Stories
Make a Donation
Français (PCU)
About CanPKU
More About CanPKU
Affiliations
ARTICLES OF INCORPORATION, CONTINUANCE, AND BYLAW
Board Members and Management
Annual General Meetings
Sponsors
Not for Profit Vs Registered Charity
Events and Research
Upcoming Events
Photos of Events
Camp MagniPHEque
Travel Scholarship/Demande de bourse de voyage
Fundraising
Avery's Ride for PKU
Research
Trials
Education and Patient Support
Downloads By Disorder
Phenylketonuria(PKU) resources - PCU ressources
Maple Syrup Urinary Disorder (MSUD) Resources - Leucinose Ressources
TYR1 resources - HT-1 ressources
Homocystinuria (HCU) Resources -HCU ressources
Isovaleric Acidemia (IVA) Resources -Acidémie isovalérique (IVA) ressources
Methylmalonic Acidemia & Propionic Acidemia (MMA/PA) Resources (AMM/AP)ressources
General Downloads
Recipes
Disability Tax Credit
Links
Need to Talk
Past Newsletters
Goals and Successes
Starter Kits Plus
ACMG Guidelines for PKU
Books about PKU
Information on PKU
MEMBERS ONLY AREA
Advocacy
CanPKU in the News
CDR Submission for Kuvan
Need for Advocacy
STORE
LINKS
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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
Email:
info@canpku.org
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