The European patient organisation MPS Europe has asked people with MPS, their relatives and their physicians: What is your MPS Challenge?
MetabERN was granted the second call for INEA/CEF for a total of 210.000 euros. The project proposed to the evaluators will focus on three main activities: the CPMS, e-Learning and telemedicine.
ERN activity report of the European Collaborative Platform and Clinical Patient Management System usage for the month of March.
The European Joint Programme on Rare Diseases brings over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.
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.
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