Latest News

B4B ANNUAL WORKSHOP AND SPECIAL CELEBRATION 9-11 SEPTEMBER 2024
 Career Opportunities at ERDERA
Job opening: Medical Writer / Research Facilitator
Patient Journey on PDH Deficiency
Postgraduate Course on Lysosomal Storage Disorders in Nierstein
Online Workshop: The Extended Neonatal Screening (ENS): Multidisciplinary Approach and Psychological Support to the Family

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.

 

DCTEP