Help professionals and centres of expertise in different countries to share knowledge.

69 founding nationally certified Healthcare Providers from 18 European countries.

Facilitate access to improved care to all patients with Inherited Metabolic Diseases (IMDs) across Europe.

Submission of Framework Partnership Agreement 2017-21 to CHAFEA.

WELCOME TO MetabERN

We are building a network from experts and patients for better care

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.

MetabERN aims to connect the most specialised centres in the area of rare IMDs to promote prevention, accelerate diagnosis and improve standards of care across Europe for patients living with IMDs.
MetabERN is entirely patient and expert-led. Through the combination of patient experience and expert knowledge from across the EU, it captures the most innovative medical advances and tailors them to patient needs.

DISEASES COVERED BY METABERN

All Inherited Metabolic Diseases (IMDs), with no exclusion, are of interest for the MetabERN. Considering the complexity of the IMDs field as a whole, it has been divided in 7 disorder groups that are the basis of the 7 MetabERN subnetworks.

Amino and organic acids-related disorders

Pyruvate metabolism mitochondrial oxidative phosphorylation disorders, Krebs cycle defects, disorders of thiamine transport & metabolism

Carbohydrate, fatty acid oxidation and ketone bodies disorders

Lysosomal Storage disorders

Peroxisomal disorders

Congenital disorders of glycosylation and disorders of intracellular trafficking

Disorders of neuromodulators and other small molecules

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.

Work Packages (WPs)

work packages

Coordination and management

Dissemination

Evaluation

Guidelines, Care Pathways and Standardization for Medical Care and Transition

Virtual Counselling Framework

Research, Translational Activities and Clinical Trials

Capacity building and training

Continuity of Care

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