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

3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON HEREDITARY METABOLIC DISEASES [SGA year 2]
The MetabERN is the first pan-european pan-metabolic network formed by 69 HCPs in 18 EU countries taking care, by now, of about 43000 patients and coupling the efforts of over 1700 multidisciplinary p...
The MetabERN is the first pan-european pan-metabolic network formed by 69 HCPs in 18 EU countries taking care, by now, of about 43000 patients and coupling the efforts of over 1700 multidisciplinary professionals. It aims to facilitate access to the best available care and address the needs across the border of all patients affected by rare inherited metabolic diseases and their families. The MetabERN is driven by the principle of patient-centeredness for the provision of its services aiming at improving the quality of life of patients and families independently from their kind and severity of any of the 700 described metabolic disorders. Patients Organisation (POs) play a crucial role into the planning and decision-making system related to patient care and management as well as policy activities impacting on the EU Rare Disease Policy Agenda. During the first year the MetabERN has been structured and organized. 7 Subnetworks of homogeneous diseases were created and 8 WPs for common activities rangings from prevention to clinical trials. Furthermore, a first patients is under discussion using the Clinical Patient Management Systems Platform (CPMS) provided by the EC. In line with the objectives and services defined in the FPA proposal, the second-year plan of activities of MetabERN focuses on: a) the optimisation of the clinical potential of MetabERN by the use of the Clinical Patient Management System Platform (CPMS); b) initiation of research activities in the metabolic field and identification of relevant partners for the development and implementation of these activities; c) the roll out of a development matrix and evaluation tools for guidelines and clinical pathways; d) the mapping of training needs for both patients and professionals in preparation of teaching and education programmes within the network in later years; e) the continued and targeted dissemination of information about the network to increase awareness in the relevant communities.
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 on Rare Endocrine Conditions [Endo-ERN]
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition...
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition. 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 stakeholders and making agreements among stakeholders in support of excellent care. The work plan is subdivided in 5 work packages containing the phased activities aimed at 8 main thematic groups.
Two key actions were required before Endo-ERN could start to generate an impact of the patients care. First, the network needed to be consolidated and we needed to map what expertise, tools, and gaps there are among the 71 members. Second, we need to create a single, easy-access platform containing all existing and future information. Surveys in the areas of educational requirements, diagnostics, and patient’s view on care have provided a solid reference on which specific strategies can be based. These network-building and mapping and the initiation of the platform activities constitute the first of 3 phases of our 5-year plan. Indeed, the end of Endo-ERN’s 1st year concludes phase 1.
In phase 2 (Y2-4) we focus on the stepwise execution and implementation of the planning generated in phase 1. While the platform has not reached its full functional state, it will be operational for most of the intended purposes, in short order. Using the Y1 developments, the coordination actions of Y2 will yield: (1) an educational program that fits with the needs of Endo-ERN members, (2) an e-environment that supports all actions of Endo-ERN, (3) Endo-ERN influence on setting guidelines and research agendas, (4) a functional clinical support Operational Helpdesk to democratise access to high-expertise consultations that also enables linking to registries (5) a start with an interconnected diagnostic laboratory network.


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)
SGA 2nd Yr ERN TransplantChild [ERN TransplantChild]
Second Annual work Program for the ERN TransplantChild - Transplantation in Children, both Solid Organ Transplantation and HSCT
TransplantChild is one of the ERNs approved by the European Commission. ...
Second Annual work Program for the ERN TransplantChild - Transplantation in Children, both Solid Organ Transplantation and HSCT
TransplantChild is one of the ERNs approved by the European Commission.
Transplanted children generates a lifelong chronic condition or `disease´, mostly imposed by the immunosuppression.
The new lifelong medical condition is common in many aspects to all transplanted children.
TransplantChild applies a multi-disciplinary and patient-centered approach, identifying common areas of clinical and therapeutic innovation with the widest possible applicability
Without leaving aside other more specific aspects of each type of transplant
Improving areas:
- Improvement of the prevention mechanisms as well as surgical, preparative, care procedures and other technical issues.
- Prevention of complications and secondary diseases related to transplantation.
- The mechanisms associated with graft tolerance vs rejection.
- Psychosocial care, education and other aspects related to quality of life.
- Adulthood transition.
- The impact on social and sustainability issues of these processes;
- The patients and families’ empowerment.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018