MetabERN aims to facilitate access to improved care for all patients with Inherited Metabolic Diseases (IMDs) across Europe, and, for this reason a Patient Board consisting of patient organisations involved in IMDs, from across Europe has been created, which 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, the 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 IMDs patient community and break isolation that many single patients currently experience. 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.
Within the Patient Board, a Steering Committee and a group of Single Point of Contacts (SPOCs) has been created. The aforementioned groups are an important aspect for the running and development of the Patient Board and they 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 organisations that work within the area of rare Inherited Metabolic Diseases. It is for this reason that any organisation interested in being actively involved within the activities of this Network is welcome to join (in principle) MetabERN’s Patient Board.
For more information about the patient involvement in MetabERN and on how to join the patient board please contact Lut de Baere (Chair) lut@boks.be or Anne Hugon (Vice-chair) ahugon@wanadoo.fr