Patient Steering and Executive Committee’s Meeting
Dear MetabERN Members and Partners,
This year has been a pivotal year for the MetabERN patient community.
We successfully managed to create the Patient Board, which represents 276 patient groups established in 19 countries across all disease areas covered by MetabERN. Given the vast heterogeneity of the diseases, we are very proud of this result: for the very first time we are bringing all these voices together to develop a common patient vision for 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.
To succeed in our intent, we believe the importance of being transparent, inclusive and participative. For this reason, we have nominated Single Points of Contact for the 9 Work Packages and 8 Subnetworks and are eager to involve anyone else who would like to play an active role. 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.
We really look forward to having this important moment of exchange and will make sure that we keep everyone informed about the outcomes. If you are interested in learning more about our plans or want to get more involved, please feel free to contact Lut De Baere at email@example.com and Anne Hugon at firstname.lastname@example.org.
Lut De Baere, Chair & Anne Hugon, Vice-Chair
MetabERN Patient Board