About The Project
MetabERN is one of 24 European Reference Networks established by the EU to connect highly specialised healthcare providers across borders. It focuses specifically on inherited metabolic diseases — a group of over 1,000 rare conditions that often affect children and require coordinated expertise that no single country can provide alone.
The network brings together 94 specialised centres in 28 European countries, along with 39 patient organisations and more than 3,000 healthcare professionals. Its work is organised into seven disease-specific subnetworks, covering conditions from lysosomal storage disorders to mitochondrial diseases.
The website serves as the central hub for the network’s activities: virtual clinical consultations through the CPMS platform, the U-IMD patient registry, educational programmes, clinical guidelines, emergency protocols and news for both professionals and patients. It also provides dedicated resources for families affected by rare metabolic conditions, including cross-border healthcare information and direct links to patient organisations across Europe.