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European Reference Network for Rare, Low Prevalence, Diagnosed and Undiagnosed Skin Disorders - Year 2 [ERN-Skin-2] [811324] - Operating Grant
Project abstract

ERN-Skin-2 proposal builds upon the ERN-Skin first year achievements and takes into consideration the recent development of the ERN IT platform (ERN Collaborative Platform and Clinical Patient Management System) and the EU policy regarding ERN. The ERN-Skin year 2 goals and activities are coherent with the ERN-Skin multiannual plan included into the Framework Partnership Agreement (FPA) and they contribute to achieve the ERN-Skin multiannual goals. The objectives are to:
• Strengthen the ERN-Skin operational framework thanks to regular meetings and conference calls of the ERN-Skin bodies
• Further develop teledermatology thanks to the organisation of 3 panels and the registeration all HCPs on the Clinical Patient Management System
• Update information on resources for patients and healthcare providers thanks to the interactive directory update
• Pool expertise thanks to:
- update and upload of information and documents on the ERN-Skin collaborative platform
- update of the ERN-Skin directory in cooperation with Orphanet
- update of the ERN-SKIN website and development of new sections inlucing one on updated list of guidelines
- organisation of the second ERN-Skin course as well as the first practical training, complemented by e-training
• Involve Member Sates with insufficient number of patients or lacking technology or expertise to provide highly specialized care thanks to the support for travel and accommodation for 5 HCPs from these member States to participate in the 2018 ERN-Skin course
• Integrate more partners, members or affiliates, from Member States not yet represented in the ERN-Skin
• Strengthen collaborative relationships with overlapping ERNs & Scientific Societies