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

3rd Health Programme (2014-2020)
European Reference Network on Rare Connective Tissue and Muskoloskeletal Diseases [ERN ReCONNET]
The objective of the ERN ReCONNET’s annual work plan for 2018 is to go on in the work already started during the first year, aimed at improving a community to enhance transnational cooperation betwe...
The objective of the ERN ReCONNET’s annual work plan for 2018 is to go on in the work already started during the first year, aimed at improving a community to enhance transnational cooperation between different groups to develop a comprehensive and harmonized approach to rare and complex autoimmune and hereditary connective and musculoskeletal diseases (rCTDs). According to the general principles of the ERNs of establishing, coordinating and managing the patients and HCP communities and pooling knowledge and expertise across the EU, all the target groups of the ERN ReCONNET will participate in the activities of the second year.
The main target groups of the ERN are patients, their families and caregivers. They will be actively involved in: i) decision making process as active members of ERN bodies; ii) participating to the activities for the identification of unmet needs related to care and education; iii) participating to the co-design activity for implementing and customising the contents of website with the specific needs of the ERN ReCONNET that will improve their proactive participation to the management of the disease.
Member HCPs are also a major target group. HCPs will work together and join their expertise in the ERN ReCONNET (through periodic meetings and through the IT platform). They will revise current pathways recognizing what matters in care and the relevance of patients reported outcomes in the disease management. Member health professionals, stakeholders as healthcare providers, healthcare systems, HTA bodies and reimbursement authorities, health insurers, industry will be involved in the co-design and planning of training activities about health economic issues and HTA.
All groups will be the target audience of dissemination activities in order to set the basis for a collaborative framework for action in the field of rCTDs.
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)
ERNICA SGA 2017 [ERNICA]
ERNICA - European Reference Network on rare Inherited and Congenital Anomalies (ICAs) aims at improving quality and safety and access to highly specialized healthcare for patients with ICAs including ...
ERNICA - European Reference Network on rare Inherited and Congenital Anomalies (ICAs) aims at improving quality and safety and access to highly specialized healthcare for patients with ICAs including rare-gastrointestinal diseases. These diseases have low and extremely low incidence, for this reason pooling the available resources at European level is a necessity to spur advancements in care and treatment. It is for this reason that our vision is to provide to all European patients, regardless of their origin or economic situation, the best multidisciplinary initial care. ERNICA is set up as a relatively small European Reference Network, bringing together 20 Healthcare Providers from 10 Member States, that aims to grow expertise in the area of prenatal health and in countries where there is a lack of knowledge and expertise.
With the establishment of the ERNICA network, specialized knowledge and expertise is brought together and already resulted in fruitful collaborations in the first year. The identified gaps in training, standards of care and research will set the agenda for second year activities. In the second year ERNICA will focus on development of guidelines, capacity building and training, initiation of ERNICA research trials, and a major target will be the successful roll out of the Clinical Patient Management System (CPMS) within our network. Within the scope of the 2018 EU Call for New ERN Members to be launched, the ERNICA network will actively reach out to those countries with less expertise in the field of congenital digestive disorders. A multidisciplinary approach is essential for the success of this network, therefore ERNICA will work on the integration of all relevant disciplines within our network. Furthermore, ERNICA will intensify the use of various communication channels to reach different target groups.

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)
VASCERN Specific Grant Agreement Proposal (Action Plan Year 2: March 2018-February 2019) [VASCERN]
This is the VASCERN Specific Grant Agreement Proposal for the second year of operation of the ERN (from March 2018 to February 2019), under the VASCERN Framework Partnership Agreement (FPA) 2017-2021....
This is the VASCERN Specific Grant Agreement Proposal for the second year of operation of the ERN (from March 2018 to February 2019), under the VASCERN Framework Partnership Agreement (FPA) 2017-2021.
VASCERN Network Coordinator is Prof. Guillaume JONDEAU, Cardiologist at the Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Bichat-Claude Bernard, CRMR (Center of Reference) Marfan Diseases and related disorders.
VASCERN aims to facilitate and improve diagnosis, treatment and care for all patients suffering from rare multisystemic vascular diseases.
The European Reference Network on rare multisystemic vascular diseases (VASCERN) gathers European highly specialized multidisciplinary Healthcare Providers (HCPs) in this thematic area of expertise.
VASCERN includes 5 Rare Diseases Working Groups (RDWGs):
- Heritable Thoracic Aortic Diseases (HTAD-WG)
- Hereditary Haemorrhagic Telangiectasia (HHT-WG)
- Medium Sized Arteries (vascular Ehlers Danlos) (MSA-WG)
- Pediatric and Primary Lymphedemas (PPL-WG)
- Vascular Anomalies (VASCA-WG)
The specific VASCERN Patient Group (ePAG) enables Patient representatives to work on common issues and to be
involved in all activities.
In addition, several transversal Working Groups work on: eHealth, Training & Education, Patient Registry,
Ethics, Communication / Dissemination.
Our Action Plan for this second year will enable VASCERN to carry on with its work and reinforce its activities with regard to various Work Packages such as: Case discussion on the Clinical Patient Management System (CPMS), Patient Pathways, Clinical Guidelines / recommendations, Mobile Application (improvements), Patient Registry & clinical outcome measures, Communication (improvements), Training & Education, Pills of Knowledge, Clinical trials & research.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018