The ERN coordinators met in Brussels on the 25th March 2019 and addressed several key aspects of the networks' development. The main discussions focused on the on-going designation by the Member States of Affiliated partners, both from a procedural point of view and concerning the practical implication for the ERNs.
On January 14th, 2019, a Clinical Patient Management System meeting is took place at the University Medical Center Groningen (UMCG) in Groningen, The Netherlands.
Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.
Call for collaboration on ultra-rare disorders of sulfur metabolism
The European Reference Networks are featured in the Commission's EUProtects campaign which aims to raise awareness of the ways in which the EU combats global challenges to protect its citizens.
The European Commission (DG SANTE) has commissioned a study to support the evaluation of the EU Orphan Regulation. This study focuses on the relevance, efficiency, effectiveness, coherence and EU added value of the regulation.
The EU legal framework for medicines for human use is intended to ensure a high level of public health protection and to promote the functioning of the internal market, and includes measures that encourage innovation.
Patient-centered research tool to increase knowledge on immune system (dys)function among CDG children and adults - The Immunology and CDG Questionnaire (ImmunoCDGQ) for Patients & Caregivers.
As a PhD student in this project you will be part of a highly international team of young researchers. You will have your individual research project at your host organisation, focusing on your discipline of interest. To complement your specialised training, you will do internships at a complementary PoLiMeR partner organization.