Informative Materials, what we’ve been up to.
A comprehensive collection of documents showcasing MetabERN’s achievements, future plans and educational materials.
Informative Materials, what we’ve been up to. Read More »
News for Patients
NORD Launches RareInsights – 5 Myths About Orphan Drugs
An insightful analysis of five common myths about orphan drugs and their real impact on healthcare systems and rare disease treatment.
NORD Launches RareInsights – 5 Myths About Orphan Drugs Read More »
Launch of a new public-private partnership to improve clinical trial infrastructure to facilitate the development of new drugs for children in Europe
The members of the “conect4children” (c4c) initiative today announced the start of a large collaborative paediatric network that will facilitate the development of new drugs and other therapies for the entire paediatric population in Europe.
Chafea organised kick-off meeting for five new rare diseases’ registries
Chafea organised a kick-off meeting for five new rare diseases’ registries in Luxembourg on the 17th of April 2018, which involved 40 participants.
Chafea organised kick-off meeting for five new rare diseases’ registries Read More »
RARE DISEASE NETWORKS, ONE YEAR IN
Health Commissioner Andriukaitis evaluates the first year of ERN operations and outlines key challenges for rare disease networks.
RARE DISEASE NETWORKS, ONE YEAR IN Read More »
ERNDIM’s plea for samples of Inborn Errors of Metabolism patients
A critical request for blood and urine samples from metabolic disorder patients to maintain high quality diagnostic laboratory standards.
ERNDIM’s plea for samples of Inborn Errors of Metabolism patients Read More »
European Reference Networks (ERNs) Accelerating and Improving Diagnosis for Rare Disease Patients
In February 2018, a European Parliamentary Meeting gathered healthcare leaders to improve diagnostic timelines for rare diseases.
Position statement from the European Reference Networks (ERNs) Network Coordinators
Historical position statement from 24 ERN coordinators emphasizing the crucial need for European collaboration in rare disease treatment.
Position statement from the European Reference Networks (ERNs) Network Coordinators Read More »
NEW LIGHT SHINES ON OUR UNDERSTANDING OF RARE DISEASES
French-Canadian research team discovers “epi-cblC,” changing our understanding of how rare metabolic diseases can be inherited.
NEW LIGHT SHINES ON OUR UNDERSTANDING OF RARE DISEASES Read More »
The first MetabERN virtual patients consultation has successfully taken place
MetabERN achieved its first virtual patient consultation via the Clinical Patient Management System, marking a new era in rare disease care.
The first MetabERN virtual patients consultation has successfully taken place Read More »
MetabERN held its first meeting with Patient and Family Associations
MetabERN’s first meeting with Patient and Family Associations established a framework for collaborative rare disease care development.
MetabERN held its first meeting with Patient and Family Associations Read More »
The first version for the Clinical Patient Management System (CPMS) is live!
The European Commission’s launch of the Clinical Patient Management System created a new framework for cross-border rare disease care.
The first version for the Clinical Patient Management System (CPMS) is live! Read More »
