Latest News

Questionnaire on the Treatment of Primary Mitochondrial Disorders with Vitamins and Cofactors
Positive Results for MetabERN and ASUFC in the Five-Year Evaluation Process of European Reference Networks (ERN)
20th Annual WORLDSymposium - February 4-9, 2024
DCTEP Learners’ Stories:  What does an educational programme on IMDs have to offer to young healthcare professionals?
Call on the EU institutions and EU Member States’ governments to stand by the European Reference Networks
MOOC From Lab to Clinic: Translational Research for Rare Diseases

What is an ERN?

European Reference Networks (ERN) help professionals and centres of expertise in different countries to share knowledge. ERNs apply EU criteria to tackle rare diseases requiring specialised care, serve as research and knowledge centres treating patients from other EU countries and ensure the availability of treatment facilities where necessary.

What is MetabERN?

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 and their families affected by inherited metabolic rare diseases. MetabERN is driven by the principle of patient-centred care to provide its services, aiming to improve patients’ and families’ quality of life.

MetabERN aims to connect the most specialised centres on inherited metabolic rare diseases to promote prevention, accelerate diagnosis, and improve care standards across Europe for patients living with inherited metabolic rare diseases. MetabERN is entirely led by patients and experts. By combining patient experience and expert knowledge from across the EU, we aim to capture the most innovative medical advances and tailor them to patients’ needs.

If you are a patient or a healthcare professional and you would like know more about how MetabERN can help you, get in touch with us filling the contact us form.

Diagnostic, Clinical & Education Programme

The online course made by MetabERN members in collaboration with the Coordination Office is addressed to medical residents, graduate students, general practitioners, and various medical specialists.

The overall objective of the programme is to create and train a new class of professionals with a scientific background and interest in Inherited Metabolic Diseases and to provide them with expert knowledge and practical experience in the phenotypic spectrum, diagnostic and clinic work-up, treatment and long-term management of these diseases.