MetabERN is a European non-profit network established by the EU to facilitate access to the best available care and address the needs across the border of all patients affected by any rare inherited metabolic disease (IMDs) and their families. MetabERN is driven by the principle of patient-centred care for the provision of its services aiming at improving the quality of life of patients and families.
WHAT ARE INHERITED METABOLIC DISEASES?
Inherited Metabolic Diseases (IMDs) is an umbrella term for the most important and vast group of rare diseases due to biochemical defects. The term encompasses a diverse and heterogeneous collection of more than 700 genetic and often lethal disorders affecting children and adults.
These conditions include disorders of all organs and require multidisciplinary collaboration between a range of professionals.
All IMDs, with no exclusion, are of interest for the MetabERN, independently from their prevalence, frequency and existing previous interest for research or therapy development.
The structure of the MetabERN is such to portion the metabolic field into 7 subnetworks.
The subnetworks are articulated in disease-specific working groups in which professional and patient associations collaborate to transversal programs common to all the subnetworks.