MetabERN European Reference Network

https://metab.ern-net.eu/

MetabERN is the European Reference Network dedicated to rare hereditary metabolic disorders, established as part of the European Union's initiative to improve diagnosis, treatment, and research for rare diseases. As the first comprehensive pan-European, patient-oriented network for metabolic conditions, MetabERN connects specialized healthcare providers across Europe to share expertise and enhance care for patients with inherited metabolic disorders.
The network encompasses over 1,600 medical experts from 69 certified healthcare centers across 18 European countries, covering more than 1,400 different metabolic conditions. These are organized into seven thematic groups: amino and organic acid disorders; pyruvate metabolism and mitochondrial disorders; carbohydrate and fatty acid oxidation disorders; lysosomal storage disorders; peroxisomal disorders; congenital disorders of glycosylation; and disorders of neuromodulators.
MetabERN's mission focuses on accelerating diagnosis, improving access to treatment information, coordinating cross-border expertise exchange, maintaining patient registries, facilitating research collaboration, and ultimately enhancing quality of life for patients with rare metabolic conditions. The network actively involves patient organizations in its governance structure, ensuring that patient voices help shape priorities and development of care pathways.
Through innovative approaches including virtual consultations, educational initiatives, and the unified European registry for inherited metabolic disorders (U-IMD), MetabERN works to reduce healthcare inequalities and ensure that every patient, regardless of location, can access the highest standard of specialized care.

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Theme:

Astra

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Education