The European Cystinosis Conference will take place in Berlin this year between the 13th and 15th of July.
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.
This event is taking place in Porto (Centro Materno Infantil do Norte), and is going to count with the presence of Prof Jaak Jaeken - the doctor who first diagnosed CDG in 1980.
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.
MetabERN is pleased to inform you that the Annual Symposium of the Society for the Study of Inborn Errors of Metabolism (SSIEM) will be held in Athens from September 4th to September 7th 2018.
We are pleased to announce the forthcoming 12th meeting of the Brains for Brain Foundation (B4B).
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.
The development of rare diseases therapies requires the right regulatory, economic and political ecosystem to ensure that investments are made in areas where research would not otherwise be carried out.