Helpful Links:
By Rare
HCU
PKU
- PCU – La phenylcetonurie
- National PKU Alliance (NPKUA)
- Mid-Atlantic Connection for PKU and Allied Disorders
- Minnisota PKU (USA)
UCDs
- National UCD Foundation (USA)
- OTC - https://cureOTCD.com
Medical Food, Medical Formula and Recipes:
- Cambrooke Foods (Ajinomoto)
- Nutricia
- Vitaflo
- www.cookforlove.org
- Taste Connections
- The Wooden Spoon
- Specialty Food Shop – The Hospital for Sick Children
- National Foods
- PKU Perspectives (USA)
- Lil Dietary (USA)
- Taranis Nutrition (France)
Shopping for Lower Protein Options:
Dealing with Symptoms:
- Cognitive Connections (Helping with Executive Function, Time Management, etc)
- Making Social Learning Stick
Social Media:
- CanPKU+ Group (FB General)
- Parent Group for PKU Families who attend Toronto SickKids (Must have a child attending this clinic)
- Worldwide PKU Support
Other 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
- 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
Rare Disease Organizations:
- Canadian Rare Disease Network (CRDN) – Réseau Canadien des Maladies Rares
- Rare Disease Day
- Regroupement québécois des maladies orphelines.
- iRare Center English Centre iRare Francais
- C.O.R.D. – Canadian Organization for Rare Disorders
- Canadian Directory of Genetic Support Groups
- 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
- Eurordis – European Organisation for Rare Disorders
Canadian Clinics:
Newborn Screening:
- Save Babies Through Screening Foundation of Canada (SBTSFC)
- BC Newborn 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
Other Helpful Links:
General:
- G.M.D.I. – Genetic Metabolic Dietitians International
- The Garrod Association
- March of Dimes
- Cord Blood Banking
- OMIM (Online Mendelian Inheritance in Man)
International Allied Disorder Groups (Outside of North America)
By Rare:
HCU
MSUD
PKU
- ESPKU
- Australia PKU Association
- 2016 PKU Scientific Update Youtube Channel, (Dutch PKU)
- NSPKU – National Society for PKU (UK)
- E.S.PKU – European Society for Phenylketonuria and Allied Disorders
- DIG-PKU – (Germany)
- Japan PKU Net (Japanese only)
- Switzerland PKU Group
UCDs