The MetabERN aims to facilitate access to improved care to all patients with Inherited Metabolic Diseases (IMDs) across Europe. Patient organizations will work in close collaboration with Healthcare Professionals to map and understand patients’ needs and identify solutions.
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.
Patient Groups 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 Dr. Lut de Baere, President of the Belgian Society for Metabolic Disorders, responsible for the MetabERN Patients organizations management, at firstname.lastname@example.org.
MetabERN, being a patient centered network, is developing the content of this page in collaboration with patients and families that are actively involved in the development of our activities.
The first MetabERN and Patient Organisation meeting organised for early next year will be used, amongst other things, to finalise this information.
Patient Groups Link to a map showing the current patient associations involved, and where they are from