MetabERN aims to facilitate access to improved care to all patients with Inherited Metabolic Diseases (IMDs) across Europe, for this aim, within our Patient Board, a Steering Committee (SC) and Single Points of Contact (SPOC) have been setup, these groups will work in close collaboration with Healthcare Professionals.
Patient representatives will be actively involved in the decision-making process and planning activities of the Network. In fact, MetabERN members have developed close collaborations with national and European patient organisations and will build on their strong relationships to extend the networks engagement with the wider IMD patient community and break isolation that many single patients currently experience. Within the Patient Board there is an elected European Patient Advocacy Group (ePAG) for MetabERN. Patient (EURORDIS) representatives are members of the network board and committees with the clear role to contribute to the development of the network including acting as a ‘communication and information’ actor between the patient and clinical community.
The Steering Committee and SPOCs will work in close collaboration with Healthcare Professionals to map and understand patients’ educational and training needs, develop guidelines for patient-involvement in patient care pathways, develop patient-focused outcomes to assess the current standards of care in order to understand gaps and identify solutions. MetabERN is driven by the principle of inclusiveness and it is intended to bring together patient groups from across the EU within the area of inherited metabolic diseases. It is for this reason that any organization interested in being actively involved within the activities of this Network is welcome to join (in principle) MetabERN’s Patient Board so that we could start sharing ideas.
For more information please contact Lut de Baere (Chair) firstname.lastname@example.org or Anne Hugon (Vice-chair) email@example.com