Επιστημονικές Εταιρείες

Society for the Study of Inborn Errors
of Metabolism (SSIEM)

Society for Inherited Metabolic Disorders (SIMD)
International Society for Neonatal Screening (ISNS)
British Inherited Metabolic Disease Group (BIMDG)
European Study Group on Lysosomal Diseases (ESGLD)
European Working Group on Gaucher Disease (EWGGD)
The Garrod Association
Genetic Metabolic Dieticians International (GMDI)
Global Organization for Lysosomal Diseases (GOLD)
New England Consortium of Metabolic Programs
European Pediatric Neurology Society

 Φορείς

European Union Committee of Experts on Rare Diseases (EUCERD)
Directorate General for Health and Consumer Affairs (DG SANCO)
International Rare Diseases Research Consortium (IRDiRC)
European Medicine Agency (EMA)
Committee for Orphan Medicinal Products (COMP)
International Conference on Rare Diseases and Orphan Drugs (ICORD)
Orphan Europe Academy
Office of Rare Diseases Research (ORDR)
Health-EU : Rare Diseases
World Health Organization (WHO)

Δίκτυα-Βάσεις Δεδομένων

European Database of Rare Diseases (ORPHANET)
ERA-Net for Research Programs on Rare Diseases (E-Rare)
European Research Network for evaluation and improvement of screening, Diagnosis and treatment of Inherited disorders of Metabolism (ERNDIM)
Metabolic Biochemistry Network (METBIONET)
Network for Genetic Metabolic Diseases Detectable by Newborn Screening (METABNET)
Euro Gentest Network
Euroglycanet
The Human Gene Mutation Database - HGMD
Human Metabolome Database - HMDB
European Platform for Rare Diseases Registries (EPIRARE)
Brains for Brain (B4B)
Pompe Center
European Concerted Action on Congenital Anomalies and Twins (European Surveillance of Congenital anomalies) (EUROCAT)
Inherited Neurometabolic Diseases Information Network (INNERMED)
Treatable Intellectual Disability (Treatable-ID)
GeneTests
GeneReviews-NCBI Bookshelf

Σύλλογοι Ασθενών

European Rare Diseases Organization (EURORDIS)
National Organization for Rare Disorders (NORD)
European Society for Phenylketonuria and Allied Disorders treated as PKU (E.S.PKU)
Fabry Support and Information Group (FSIG)
European Gaucher Alliance (EGA)
Society for Mucopolysaccharide Diseases (MPS Society)
The CDG Family Network
Children Living with Inherited Metabolic Diseases (CLIMB)
International Pompe Association (IPA)
Vaincre les Maladies Lysosomales (VML)
European Galactosaemia Society (EGS)
Galactosaemia Support Group (GSF)
Galactosemia Foundation