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

69 founding nationally certified healthcare providers from 18 European Member States.

MetabERN represents 44 patient associations from 17 European Member States.

Projects in which MetabERN are involved.

WELCOME TO MetabERN

We are building a network of 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 patients’ needs.

DISEASES COVERED BY METABERN

All Inherited Metabolic Diseases (IMDs) are of equal interest to MetabERN. Considering the complexity of the IMDs field as a whole, it has been divided in to seven disorder groups, which make up the seven 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

Work Packages (WPs)

The ultimate goal of MetabERN is to facilitate access to better healthcare for patients with Inherited Metabolic Disorders, regardless of their country of origin. This goal will be attained by the fulfilment of 8 SMART objectives, corresponding to the eight Work Packages (WPs) below.

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

Need help or information?

 

Contact us we’ll help you connect with the right expert
for your specific question or problem.

Please click the contact us button below, and fill in the form and click send. We will respond to your email as soon as possible.