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.
The 2nd Course on Low Protein diet for Metabolic Patients will took place on 29th March 2019 at Hospital 12 de Octubre, in Madrid. El 29 de Marzo de 2019 tendrá lugar en el Hospital 12 de Octubre, en Madrid, el Segundo Taller de Dieta Hipoproteica para Pacientes Metabólicos.
On January 14th, 2019, a Clinical Patient Management System meeting is took place at the University Medical Center Groningen (UMCG) in Groningen, The Netherlands.
To improve the realisation of clinical trials within the network, and adequately adapt the protocols to patients' expectations, MetabERN wishes to understand your perception of clinical trials.
Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point Rare Disease Day in their life.
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