Rete di riferimento europea (ERN) per le malattie ereditarie rare – MetabERN
MetabERN is the first pan-European metabolic network that aims to facilitate access to the best available care for patients with rare inherited metabolic diseases (IMDs). MetabERN represents today 69 founding Healthcare Providers (HCPs) from 18 EU Member States and 44 patient organisations (POs), and is endorsed by the Society for the Inborn Errors of Metabolism (SSIEM). In line with the objectives and services defined in the proposal for a Framework Partnership Agreement, MetabERN aims to continue optimising the programmes centred on high-quality patient care. In particular MetabERN will: 1) strengthen the collaboration between participating HCPs and patients; 2) increase awareness of hereditary metabolic diseases in relevant communities; 3) develop dedicated educational and training programmes to address the identified HCPs’ and patients’ needs; 4) develop guidelines and clinical pathway recommendations on IMDs; 5) optimise the use of the Clinical Patient Management System (CPMS) and other service platforms to advance cross border collaboration for optimal diagnosis and treatment of rare IMDs; 6) analyse the state-of-play in IMD diagnosis and care; 7) ensure systematic involvement of patient representatives in MetabERN activities, and 8) put in place an efficient monitoring system for quality assurance of the overall execution of the three-year plan. To demonstrate the crucial importance of patient involvement and participation, a dedicated work package has been included in the work plan.