MetabERN Bridging Plan 2022-2023

2026-07-22

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). After 5 years of activities, MetabERN represents today 98 Healthcare Providers (HCPs) from 27 EU Member States and UK, and 44 patient organisations (POs). In the past 5 years MetabERN worked on a myriad of topics to ensure coordinated actions in creating the widest possible collaboration among physicians and patient assoc. Efforts to harmonize all aspects in the chain of care and practice will continue in the next programme. Indeed, in line with the objectives and services defined in this proposal MetabERN aims to continue optimising the programs centered on high-quality patient care. In particular MetabERN will: 1) strengthen the collaboration between old and new participating HCPs and patients representatives facilitating the integration and collaboration of all the represented stakeholders; 2) increase awareness of hereditary metabolic diseases in relevant communities assuring proper communication, dissemination and visibility; 3) put in place an efficient monitoring and quality improvement system for quality assurance of the overall execution of the next 1.5-year plan; 4) Promote and optimise the use of the Clinical Patient Management System (CPMS) and 5) U-IMD registry and other key digital tools such as the Vademecum electronic app and the emergency protocol aimed to advance collaboration for optimal diagnosis and treatment of rare IMDs: 6) To identify training and education needs , opportunities and resources for different audiences; 7) To collect and share information aimed at facilitating the establishment of networking and knowledge sharing for the development of research proposals; 8) assure a continuity of a person centred care looking at ways to improve patients’ health outcomes throughout the care pathways and optimizing the clinical care pathways.

Italy

2025-12-15