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.
News for Patients
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 »
