Patient Representatives / Projects

3rd Health Programme (2014-2020)
European Reference Network for Rare, Low Prevalence, Diagnosed and Undiagnosed Skin Disorders [ERN-SKIN]
The ERN-SKIN 2017 Work Programme aims at laying the groundwork for the key strategic objectives set forth in the 2017-2021 Work Plan. The objectives are:
• to build the operational framework and se...
The ERN-SKIN 2017 Work Programme aims at laying the groundwork for the key strategic objectives set forth in the 2017-2021 Work Plan. The objectives are:
• to build the operational framework and set up all the necessary functioning networking services, evaluated by a quality control strategy, with a special focus on:
--Patient Representatives Council to empower patients in the organization of cross-border healthcare pathways
--8 sub-thematic groups on high level patient management and research
--4 transversal groups: training & therapeutic education, e-health & registries, Deep phenotyping, clinical outcomes.
• to cover the largest possible number of diagnosed and undiagnosed rare and low prevalence skin disorders in order every patient finds a home in the ERN-SKIN with the inclusion of 4 new sub-thematic groups
• to integrate more members or affiliates, from Member States not yet represented in the ERN-SKIN with a particular attention for including small and Eastern European countries and involving in training activities Member Sates with insufficient number of patients or lacking technology or expertise
• to develop collaborative relationships with overlapping ERNs & Scientific Societies with the set up of common working groups to promote a multidisciplinary management
• to assess reliable resources for patients and healthcare providers thanks to survey on available services for patients and professionals, updated guidelines and best practices, validated therapeutic education programs, high-quality training sessions as well as efficient information and dissemination tools.
• to pool expertise and provide the first ERN-SKIN services: -- the first version ERN-SKIN directory ;
-- the first version ERN-SKIN website; --the first ERN-SKIN training; -- the development of the ERN-SKIN guidelines on ichthyosis; -- the definition of concrete road maps by each sub-thematic and transversal groups, a prerequisite to update/develop guidelines and build innovative e-health.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: Patient Representatives
3rd Health Programme (2014-2020)
European Reference Network for Rare, Low Prevalence, Diagnosed and Undiagnosed Skin Disorders - Year 3 to 5 [ERN-Skin]
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 considerati...
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
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: Patient Representatives