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.
ERN Clinical Patient Management System Webinar to introduce CPMS 17.0 to be held for all ERN Members. CPMS 17.0 will be released at the beginning of March.
Call for collaboration on ultra-rare disorders of sulfur metabolism
This 15th annual symposium is designed for basic, translational and clinical researchers, patient advocacy groups, clinicians, and all others who are interested in learning more about the latest discoveries related to lysosomal diseases and the clinical investigation of these advances.
3rd International Homocystinurias Patient-Expert Meeting on Thursday 28th February – Friday 1st March 2019 in Rome, Italy.