On November 3rd the first meeting of the subnetwork for Lysosomal Storage Diseases (LSDs) of MetabERN will take place in Rotterdam, the Netherlands.
We successfully managed to create the Patient Board, which represents 44 patient groups established in 17 countries across all disease areas covered by MetabERN. We have therefore formed a Patient Steering Committee that will work hand-in-hand with the Medical Steering Committee to ensure that MetabERN is a truly person-centered European Reference Network. Now that a sound governance structure is in place, we are developing an Action Plan that will be discussed at the next Patient Steering and Executive Committees Meeting on 12 January in Brussels.
This Winter School is organised as part of the “Next Generation Life Scientists” Graduate School of Research.
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.
Please find, in this article, detailed information for the next CPMS webinar.
The E.S.PKU Conference 2018 will take place, at Hotel NH Venezia Laguna Palace, Venice, Italy, from November 1st to November 4th.
This Policy Roundtable, organised by the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU), was hosted by MEPs Deirdre Clune (Ireland, EPP) and Nessa Childers (Ireland, S&D).
The EU legal framework for medicines for human use is intended to ensure a high level of public health protection and to promote the functioning of the internal market, and includes measures that encourage innovation.
The Romanian Foundation for Lysosomal Diseases (FRBL), founded in 1998 in Cluj-Napoca, has marked 20 years since its inception.