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Written by admin
Wednesday, 27 February 2008 20:40
General Interest
C.O.R.D. - Canadian Organization for Rare Disorders
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
Journal of Inherited Metabolic Disease
ESPEN - European Society for Clinical Nutrition and Metabolism
G.M.D.I. - Genetic Metabolic Dietitians International
March of Dimes
OMIM (Online Mendelian Inheritance in Man)
Eurordis - European Organisation for Rare Disorders
PKU Tri-Unity, Spreading awareness for PKU in British Columbia
PKU and BH4
Phenylketonuria: What is it?
PAHdb - The PAH Knowledgebase Scientific database about phenylalanine hydroxylase (PAH) and the different kinds of mutations of PKU
PKU Tri-Unity - Spreading Awarness for PKU In British Columbia
PKU World Link - Connecting people with PKU Worldwide
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 phénylcétonurie
Phénylcétonurie (PCU) - French detailed information about PKU or as they call it 'PCU'
BH4.org - Everything about BH4 or Tetrahydrobiopterin
PKU and BH4 Home Page
Patient Power - Special edition series on living with PKU
PKU Argentina (Asociacion de asistencia al Fenilcetonurico PKU Argentina)
AsFeGa - Asociacion Fenilcetonurica y OTM de Galicia (Spain)
ASPKUCYL - ASOCIACIÓN 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 Stoffwechselstörungen e.V. (Germany)
Japan PKU Net (Japanese only)
APOFEN - Associação Portuguesa de Fenilcetonúria e outras doenças metabólicas (Protugal)
APEP - Association de parents d'enfants phénylcétonuriques (Switzerland)
Schweizerische Interessengemeinschaft Phenylketonurie und andere mit Eiweisseinschränkungen behandelte Stoffwechselstörungen (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 Tyrosinémiques du Québec
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
Global Organisation for Lysosomal Diseases
Maple Syrup Urine Disease (MSUD) - The Maple Syrup Urine Disease Support Group
The Myelin Project
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 québécois de dépistage néonatal sanguin
Programme québécois de dépistage néonatal 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
Last Updated ( Tuesday, 12 August 2008 17:35 )