On the occasion of Rare Diseases Day, on 28 February 2018, the European Reference Network for Rare Bone Disorders (ERN-BOND) coordinated by Luca Sangiorgi (IT), with the kind support of EURORDIS, organized a European Parliamentary Meeting entitled: European Reference Networks – Accelerating and Improving Diagnosis for Rare Diseases Patients.
As Coordinators of the 24 European Reference Networks (ERNs), we stand together and united with our 900 strong members (healthcare providers) and the patient community, in the fight against rare diseases.
French and Canadian scientists make discovery that could affect diagnosis, genetic counselling and therapeutic approaches in patients with a rare condition.
We are glad to announce that the first MetabERN virtual patients consultation using the Clinical Patient Management System (CPMS) successfully took place on 15 January 2018. A second one is already scheduled for mid-February.
According to the letter sent to all the ERN Coordinators by Andrzej Rys (Director responsible for health systems, medical products and innovation Directorate-General for Health and Food Safety, European Commission), we would like to draw your attention to the difference between the purposes behind the two primary information systems provided for use by the European Reference Networks.
MetabERN held its first meeting with Patient and Family Associations on the 13th of January 2018.
CDG & Allies - PPAIN are very pleased to inform the lauch of the 4th edition of the Liliana Scientific Initiation Scholarship.
We were deeply saddened to hear that the brave and inspiring Christine Lavery passed away on Tuesday 19th December 2017 in hospital surrounded by her family, following a brief illness. Christine has played an outstanding role in our Lysosomal storage diseases community and for the entire field of rare inherited diseases.
The European Commission (DG SANTE), on November 20th 2017, launched the First Clinical Patient Management System. It’s a web-based application aimed at supporting ERNs in improving the diagnosis and treatment of rare or low prevalence complex diseases across national borders of Member States in Europe. By providing tools for collaboration and virtual consultations CPMS enables […]