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 »
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 »
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 »
In February 2018, a European Parliamentary Meeting gathered healthcare leaders to improve diagnostic timelines for rare diseases.
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 »
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 »
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’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 »
Please download and read the attached document about Metabolic Diseases: Jimmy and metabolic disease (NL) Comic book
Jimmy and metabolic disease (NL) Comic book Read More »
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 »
Webinar Clinical Pathway Recommendations Webinar Clinical Pathway Recommendations by Ursula Plöckinger on CPR.
Webinar Clinical Pathway Recommendations Read More »
The 14th International Congress of Inborn Errors of Metabolism announces key dates for its August 2021 scientific gathering.
ICIEM: 14th International Congress of Inborn Errors of Metabolism Read More »
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