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European Reference Network for Rare, Low Prevalence, Diagnosed and Undiagnosed Skin Disorders - Year 3 to 5 [ERN-Skin] [838437] - Operating Grant
Project abstract

The ERN-Skin 3-year proposal for third to fifth year of the Framework Partnership agreement (FPA) n°739505 implementation builds upon the ERN-Skin year 1 and 2 achievements. It takes into consideration the recent development of the ERN IT platform (ERN Collaborative Platform and Clinical Patient Management System - CPMS) and the EU policy on ERN. The goals and activities are coherent with the ERN-Skin multiannual plan included into the FPA . By pooling expertise, the planned activities will contribute to achieve the ERN-Skin multiannual goals:
• Strengthen the ERN-Skin operational framework thanks to regular meetings of the ERN-Skin bodies, the management of the Brexit consequences and the integration of members or affiliates
• Cover the largest possible number of diagnosed but also undiagnosed rare and low prevalence skin disorders so that every patient finds a home in the ERN-Skin
• Provide reliable information on diseases and services thanks to the interactive directory update
• Further develop multidisciplinary management and facilite the mobility of expertise thanks to CPMS and cooperation with other ERNs and scientic societies
• Share and spread harmonized best practices thanks to the adaptation and development of guidelines and recommendations for health care professionals
• Develop health care professional skills thanks to courses, e-trainings and practical trainings
• Empower patients thanks to the development of specific patient education programmes
• Involve Member States with insufficient number of patients or lacking technology or expertise thanks to support to attend courses and access CPMS
• Develop, test and use of the Skin Phenotyping Ontology and Terminology App
• Issue recommendations for an ERN-Skin registry