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

3rd Health Programme (2014-2020)
VASCERN 3-year Detailed Work programme for third to fifth year of the FPA implementation (March 2019-February 2022) [VASCERN]


This is the VASCERN Specific Grant Agreement for Year 3 to Year 5 under the Framework Partnership Agreement. VASCERN Network Coordinator is Prof. Guillaume JONDEAU, Cardiologist at the Assistance Pu...


This is the VASCERN Specific Grant Agreement for Year 3 to Year 5 under the Framework Partnership Agreement. 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 will enable VASCERN to carry on with its work and reinforce its activities with
regard to various Work Packages detailed in this project proposal.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
3rd Health Programme (2014-2020)
European Reference Network on BONe rare Diseases [ERN BOND Years 3-5]
The main ambition of the ERN BOND is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone dis...
The main ambition of the ERN BOND is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone diseases (RBD), supporting them in the full realisation of their fundamental human rights. To meet this goal, BOND gathers European professionals highly specialized in the field of RBD for both scientific research and multidisciplinary care to increase knowledge on RDs, to improve healthcare quality and patient safety, to increase access to ultra specialized medical expertise and accessible information beyond national borders. ERN BOND aspiration is to support patients affected by RBD and their families, to increase their capacity to undertake a participative role in care provision, to set priorities and to participate in decisions regarding their care plan and their life project. BOND will bring rapid interchange of information, skills and practice to shorten time to diagnosis, and treatment, in collaboration with Patients Representatives (ePAGs). Efforts to target less developed affiliate partners, where the gap between existing provision and that aspired to through BOND is largest, will be carried, meeting the target of improving healthcare in ALL Members States.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
3rd Health Programme (2014-2020)
Paediatric Cancer European Reference Network Y3-5 [ERN-PAEDCAN-Y3-5]
The mission of ERN-PAEDCAN is to improve outcomes of childhood cancer and malignant haematological diseases by reducing the current inequalities in different member states. Comparative population-base...
The mission of ERN-PAEDCAN is to improve outcomes of childhood cancer and malignant haematological diseases by reducing the current inequalities in different member states. Comparative population-based cancer registry research has provided robust evidence for significant inequalities in survival from childhood cancer across Europe: the difference may be as much as 30% units, with worse outcomes in Eastern Europe. Despite a reduction in the geographical differences in the period 2005–09, the former socialist economies still have roughly 20% excess mortality from cancer in children compared with the rest of Europe. In its second year ERN-PAEDCAN aims to continue to provide paramount requirements for ‘Cross-border healthcare’ allowing the provision of healthcare to children with cancer in a Member State other than the Member State of affiliation. We identify target groups with conditions requiring a particular concentration of resources or expertise, especially when the expertise with certain cancer conditions is rare and case volume low. Taking into account the potential burden on families seeking cross border health care ERN-PAEDCAN intends to establish mechanisms to facilitate movement of information and knowledge rather than patients. We aim to extend local and national ‘tumour board’ culture to the cross border level with identified and required ICT tools and eHealth networks. High-quality, accessible and cost-effective healthcare for childhood cancer are achieved by strengthening the integration of pre-existing knowledge and expertise, and fostering stronger cooperation between patients, professionals and healthcare authorities. The innovative contribution of ERN-PAEDCAN is a clear roadmap to approved expert referral sites and tumour advisory boards for healthcare providers fulfilling our vision of a more supportive environment for children with cancer with special needs by integrating pre-existing networks and knowledge across borders.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks