Filter on [TOPICS=ERN Specific Grant Agreements Year 2]

3rd Health Programme (2014-2020)
European Reference Network for Rare, Low Prevalence, Diagnosed and Undiagnosed Skin Disorders - Year 2 [ERN-Skin-2]
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 Managem...
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
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
3rd Health Programme (2014-2020)
European Reference Network for Rare Neurological Diseases [ERN-RND]
ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as establi...
ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as established rare disease infrastructures such as Orphanet, EURORDIS and RD-Connect. Through coordination and knowledge transfer, ERN-RND shall establish a patient-centred network to address the needs of patients with RND of all age groups, with or without a definite diagnosis, by implementing an infrastructure for diagnosis, evidence-based management, treatment and collection of patient data. The network will develop, disseminate, implement and supervise best practice guidelines and care pathways to optimize patient care and facilitate training and capacity building in the field. A special effort will be aimed to member states with less developed infrastructure for caring for RND patients, where no current partners are located, or with only affiliated or collaborative partners. ERN-RND will inform planning of European and national health care in RND, facilitating translation of research activities into clinical practice and the development of future therapies. Keeping in line with ERN-RND’s strategic objectives the six most important operational targets for year 2 are:
• Introduction of CPMS in ERN-RND for e-consultation of clinical cases
• Consensus on disease group specific care quality indicators
• Consensus on diagnostic flowcharts for all RND covered by ERN-RND
• Identify disease groups specific most important care needs for RND in the EU
• Establish ERN-RND web-site as THE RND information hub and use it as the core of a ERN-RND information strategy
• Define minimum quality and interoperability criteria for RND registries

Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
3rd Health Programme (2014-2020)
European Rare Kidney Diseases Reference Network [ERKNet]
The European Reference Network for Rare Kidney Diseases (ERKNet) will offer highly specalised healthcare to children and
adults suffering from congenital and acquired glomerulopathies, tubulopathies, ...
The European Reference Network for Rare Kidney Diseases (ERKNet) will offer highly specalised healthcare to children and
adults suffering from congenital and acquired glomerulopathies, tubulopathies, metabolic and stone forming nephropathies,
thrombotic microangiopathies, renal ciliopathies and other anomalies of kidney and urinary tract development.
The Network comprises almost 40 centres in 12 European countries with specific expertise documented by large patient
numbers (collectively more than 45,000), state-of-art diagnostic services and therapeutic equipment and professional
multidisciplinary care.
The Members will share best practices by offering physical and virtual cross border consultation, series of educational
workshops and webinars, e-learning modules on focused rare kidney disease topics, short-term training opportunities, and
by endorsing existing and developing new clinical practice guidelines and recommendations wherever needed. In
collaboration with the patient organisations, the Network will collect informational materials on all rare kidney diseases and
their treatments and make the documents available in multiple languages to affected families throughout Europe.
Furthermore, ERKNet will strive to harmonize and further optimize patient care across the Member centres by regularly
monitoring and benchmarking guideline adherence, disease-specific performance and outcomes measures, as well as
patient safety and satisfaction.
Another important goal of the Network will be to actively support clinical research into risk factors and biomarkers of early
and severe disease phenotypes, and provide a platform for innovative interventional clinical trials aimed at improving or
stabilizing kidney functions and preventing progressive renal failure in adults and children with rare kidney diseases.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018