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

• 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