Filter on [TOPICS=ERN Specific Grant Agreements 2019 - 2021]

3rd Health Programme (2014-2020)
European Reference Network on Rare Endocrine Conditions [Endo-ERN]
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. The actions, as defined in our 5-year plan (FPA), are geared at mitigating differences in awareness and knowledg...
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. The actions, as defined in our 5-year plan (FPA), are geared at mitigating differences in awareness and knowledge, supporting and informing research, connecting various (types of) stakeholders and making agreements in support of excellent care. The work plan is subdivided in 5 work packages containing phased activities aimed at 8 main thematic groups. After sculpting a coherent network in Y1, key initiation actions are currently being addressed. While the platform has not reached its full functional state yet it will be operational for most of the intended purposes within Y2. This functional network will have the requirements of troubleshooting and adaptations, which will be the focus of Y3, while Y4 will be centred around internal benchmark activities. Y4 will make any gaps in the network evident that may have been overseen before the transition from a theoretical to an operational network. The Y3-4 actions under the proposed SGA will result in the integration of 5 WPs and 8 MTGs to a point of functional operations. Key features include ability to perform virtual consultations, MTG-based e-learning, endocrine overarching research strategy/agenda in line with endocrine societies, effective matching of patients and expert labs for optimal care. The final period of the framework period is geared towards mechanisms to ensure quality (of activities, outcomes and added value, and members and their efforts) as well as sustainability. For this, Endo-ERN develops internal processes and also aims to collaborate with other stakeholders (ERNs, European Commission, national ministries of health, etc) to coordinate actions for quality assurance and sustainability. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition. This final program will ensure this mission is implemented to make it a mainstay in the European healthcare ecosystem.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
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: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
3rd Health Programme (2014-2020)
Specific grant Agreement 2019-2021 with THE HOPITAUX UNIVERSITAIRES DE STRASBOURG [ERN-EYE]
Built in close collaboration with patient associations, ERN-EYE is focused on rare eye diseases (RED) and involves 29 Hospitals in 13 Member States of the European Union (EU). ERN-EYE first and second...
Built in close collaboration with patient associations, ERN-EYE is focused on rare eye diseases (RED) and involves 29 Hospitals in 13 Member States of the European Union (EU). ERN-EYE first and second year’s activities have been mainly focused on an inventory phase. The first major achievement has been to collectively revisit the ontologies concerning rare eye diseases (with ORPHANET and Human Phenotype Ontology). The second main action was the implementation of the virtual clinic driven by the European Commission tools with an ophthalmic customisation and launched during 2018. This will improve the care of patients with rare eye diseases across the EU.

The last 3 years of this project will entail the coordination of continued activities that have been launched in year 1 and year 2. Currently, many activities are being covered, such as the evaluation of genetic testing across EU and how to improve it, the development of a basic ERN-EYE registry, the development of research projects within the specific working groups topics (retina, paediatric ophthalmology, anterior segment, neuro-ophthalmology). Continuing this progression, ERN-EYE will improve its dissemination activities, especially towards patients and general public with particular effort to spread support in all ERN-EYE members EU languages to ensure the best accessibility for all. Finally, particular attention will be given to the evaluation & assessment of ERN-EYE activities.

The years 3 and 4 should bring full implementation and the last fifth year will be a consolidation year ensuring sustainability of the network and the settings developed during these 5 years for highly specialized patient care. The active involvement and support of patient groups through ePAGs is a highly valuable and continuous strength.

Start date: 01/03/2019 - End date: 28/02/2022
Keywords : [ Ern ] [ Rare Eye Diseases ]

Call: Multiannual Grant Agreements for European Reference Networks