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3rd Health Programme (2014-2020)
ERN Rare Craniofacial Anomalies and ENT Disorders [CRANIO]
This proposal lays out the Work Programme for 2017 within the contents of the Multiannual Work Plan for the European Reference Network for Craniofacial Anomalies and ENT disorders (ERN CRANIO). ERN CR...
This proposal lays out the Work Programme for 2017 within the contents of the Multiannual Work Plan for the European Reference Network for Craniofacial Anomalies and ENT disorders (ERN CRANIO). ERN CRANIO involves teams from 29 European hospitals (10 Member States) that provide care, education, teaching, research and management of rare craniofacial anomalies, cleft lip/palate and ENT disorders. Our vision is that the best multidisciplinary initial care for all those with craniofacial anomalies and ENT disorders is not a privilege to be purchased but a moral right secured for all European patients.
Our MISSION is to consistently and persistently strive towards achieving our vision through:
1. Establishment and management of a steady referral network for patients with craniofacial anomalies and ENT disorders throughout Europe; 2. Improvement of the quality of care, by enhancing diagnosis, treatment and follow-up of the patients with rare craniofacial anomalies and ENT disorders; 3. Minimization of the deviation from our operational standards and sharing best practices through suitable quality improvement initiatives, while monitoring their effectiveness using measures and indicators; 4. Stimulating innovation through multicentre research projects on (genetic) causes, pathophysiology, and associated problems, and introduction of eHealth; 5. Supporting the continuous learning and development of all our members by providing high quality educational and training opportunities to medical, nursing and other healthcare professionals; 6. Disseminating gained knowledge, making it available to all stakeholders.

In Year 1, ERN CRANIO will focus on collecting and analysing the available data on diagnoses, treatment, follow-up programmes, education and eHealth. In addition, the aim is to further expand the network in the first year by including relevant partners and experts. The results of the first year will set the agenda for subsequent years.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources o...
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources or expertise, as in the case of rare diseases, on the basis of criteria to be established under Directive 2011/24/EU.
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON RARE HEMATOLOGICAL DISEASES [ERN-EuroBloodNet]
ERN-EuroBloodNet main goal is to improve the healthcare and overall quality of life of patients with a rare hematological disease (RHD) by facilitating best practice sharing for safe and high-quality ...
ERN-EuroBloodNet main goal is to improve the healthcare and overall quality of life of patients with a rare hematological disease (RHD) by facilitating best practice sharing for safe and high-quality cross-border healthcare and developing more evidence based clinical tools and cost-effective treatments. As a contribution to the 3rd Health Programme (objective 4-Facilitate access to better and safer healthcare for EU citizens), EuroBloodNet will aim at decreasing current cross-border health barriers. EuroBloodNet gathers 66 highly skilled multidisciplinary healthcare teams in 15 Member States, and advanced specialised medical equipment and infrastructures which will facilitate concentration of resources for the design, validation and implementation of high-quality and cost-effective services aimed at facing the challenges of RHD. Involvement from the outset of patient associations will contribute to patient empowerment, in keeping with EuroBloodNet patient-centred approach. EuroBloodNet’s objectives will be achieved through a) the implementation of a reliable repository of best healthcare services available across EU, guidelines for RHD, systematic assessment of clinical outcome indicators, assessment and promotion of ongoing clinical trials and collaborative research initiatives, and b) the development of inter-professional consultation systems and blended (on-site & on-line) educational programmes and short stays. Expected outcomes include reduction of healthcare inequalities for RHD in the EU by a)establishing a cross-border referral system allowing safe information, samples and patient mobility, b) provision of equal access to highly specialised procedures and innovative therapies resulting from best practice sharing, continuous medical education and virtual interprofessional consultation for complex RHD cases, and c)facilitation of a timely and efficient translation of research results into patient oriented strategy at the clinical and the public health level
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources o...
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources or expertise, as in the case of rare diseases, on the basis of criteria to be established under Directive 2011/24/EU.
3rd Health Programme (2014-2020)
ERN-EYE [ERN-EYE]
Rare Eye Diseases (RED) represent a wide group of rare diseases that display great genetic and phenotypical heterogeneity, while their epidemiology remains mainly unclear. RED affect a limited number ...
Rare Eye Diseases (RED) represent a wide group of rare diseases that display great genetic and phenotypical heterogeneity, while their epidemiology remains mainly unclear. RED affect a limited number of patients which are dispersed geographically and are the leading cause of visual impairment/visual loss in children and young adults in the EU. Currently the limited number of patients in combination with the scarcity of relevant knowledge, resources and expertise represent major barriers to early diagnosis, access to proper care and optimal treatment, and to the improvement of medical expertise, specialized training and research. However, visual impairment/visual loss poses a huge social-economic burden on individuals, the healthcare system and the society. ERN-EYE is dedicated to provide best care for EU RED patients.
By bringing together knowledge, new and existing resources and expertise across the EU, ERN-EYE mission is to facilitate access to a better, safer, high-quality, cost-effective, and cross-border healthcare system for all these European citizens with RED. ERN-EYE currently consists of 29 healthcare providers originating from 13 Member States and will cover mainly genetically-based RED. The heart of the ERN-EYE project lies in the creation of a virtual Rare Eye Diseases Clinic: EyeClin. As such, EyeClin will bring expertise to all EU citizens affected (or suspected to be affected) by a RED and will allow them secondary participation to initiatives generated or recognized by the ERN (registries, research, trials, etc.) EyeClin has been subdivided in 4 clinical departments: retinal RED, paediatric RED, neuro-ophthalmology RED, anterior segment RED, comparable to the ones found in a standard university hospital and 6 transversal departments corresponding to: genetic diagnosis, research activities, registries, guidelines, dissemination and outreach, medical training and teaching.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources o...
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources or expertise, as in the case of rare diseases, on the basis of criteria to be established under Directive 2011/24/EU.