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Medical and health sciences
- Paediatrics
ERN RARE-LIVER is one of 24 established ERN’s. It has 63 members from 25 countries across Europe. It has created major impacts in terms of training dissemination, use of IT to enhance diagnostics, created a registry and built a vibrant network focused on improving patient care. ERN RARE-LIVER covers a wide range of diseases, many of them very heterogeneous and complex, involves paediatricians and adult physicians as well other specialists. In addition, ERN RARE-LIVER focuses on multi-ERN topics, in particular transition and quality of life, both topics most relevant to good patient care. ERN RARE-LIVER has reviewed its activities against funded programs and the current EU4H call. The objective is to improve clinical care and patient outcomes; achieved with active engagement with patients, training, education, use of technology, dissemination of knowledge and skills, as well as spreading best practice. Within this funding iteration ERN RARE-LIVER will continue its dissemination through the website and patient/public videos as well as other mechanisms. It will develop its most successful CPMS pilot scheme to serve as many patients as possible. In addition, support will be provided to the R-LIVER registry to increase coverage in terms of diseases covered and patients included, providing high quality natural history and quality of care data. ERN RARE-LIVER will also review existing data for upscaling and initiate research activities on the basis of detailed clinical needs analyses. The network will focus particularly on generating new and updating existing clinical guidelines to cover the majority of rare liver disease with high quality guidance. Transition from paediatric to adult care has been identified as critical across Europe, and various ERNs. ERN RARE-LIVER will take the lead to set best practice standards for good transitional care, to evaluate the effectiveness of improvement measures, and to provide assistance to member centers to improve their services.