The annual meeting will be focusing on the achievements of the first year of MetabERN activities, the definition of the final report, the starting and planning of the second year of activities…
Annual MetabERN Meeting, FRANKFURT at the Lindner Congress Hotel on April 9-10th, 2018 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 »
May 2018 postgraduate training in Nierstein offered comprehensive education on LSDs with leading experts for early-career physicians.
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 »
The European Cystinosis Conference will take place in Berlin this year between the 13th and 15th of July.
The European Cystinosis Conference, July 13 – 15, 2018 Read More »
In February 2018, a European Parliamentary Meeting gathered healthcare leaders to improve diagnostic timelines for rare diseases.
The 2018 Porto workshop brought CDG families and healthcare professionals together, featuring CDG pioneer Prof. Jaak Jaeken.
Workshop para Famílias e Profissionais CDG/Workshop for CDG Families and Professionals Read More »
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 »
The 2018 SSIEM Symposium in Athens gathered metabolic medicine experts to bridge established knowledge with emerging discoveries.
SSIEM ANNUAL SYMPOSIUM: “Old Roads, New Connections” Read More »
The 2018 Brains for Brain Foundation workshop in Frankfurt united experts to advance research in pediatric neurodegenerative disorders.
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 »
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