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)
Children Living with Inherited Metabolic Diseases (CLIMB)
International Pompe Association (IPA)
Vaincre les Maladies Lysosomales (VML)
European Galactosaemia Society (EGS)