Ern / Projects

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: Ern
3rd Health Programme (2014-2020)
European Reference Network (ERN) on Rare Multisystemic Vascular Diseases (VASCERN), SGA Proposal 2017 [VASCERN]
This is the VASCERN SGA Proposal for 2017, under the ERN Framework Partnership Agreement (FPA) 2017-2021.
The ERN is coordinated by the ERN Network Coordinator, Pr. Guillaume JONDEAU - AP-HP, H�pi...
This is the VASCERN SGA Proposal for 2017, under the ERN Framework Partnership Agreement (FPA) 2017-2021.
The ERN is coordinated by the ERN Network Coordinator, Pr. Guillaume JONDEAU - AP-HP, H�pital Bichat-Claude
Bernard, CRMR Marfan Diseases and related disorders (Centre de R�f�rence Maladies Rares Syndrome de Marfan et
apparent�s).
VASCERN aims to facilitate and improve diagnosis, treatment and care for ALL patients suffering from Rare
Multisystemic Vascular Diseases, thus enhancing access to care, and improving quantity and quality of life of these patients.
Networking, sharing and spreading our expertise, promoting best practices, guidelines and clinical outcomes, patient empowerment, improving knowledge through clinical and basic research are among our objectives.
The European Reference Network on Rare Multisystemic Vascular Diseases gathers European highly specialized
multidisciplinary Healthcare Providers (HCPs) in this thematic area of expertise. The Network includes 5 Rare
Diseases Working Groups: Heritable Thoracic Aortic Diseases (HTAD-WG), HHT-WG, Medium Sized Arteries (vascular Ehlers Danlos) (MSA-WG) ,Pediatric and Primary Lymphedemas (PPL-WG) and Vascular Anomalies (VASCA-WG). The specific Patient Group enables Patient representatives to work on common issues and to be involved in all activities. In addition, several Thematic Working Groups are established to better tackle transversal issues which are planned in the Multiannual Work Programme on: eHealth, Training & Education, Patient Registry, Ethics, and Communication / Dissemination.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: Ern
3rd Health Programme (2014-2020)
ERN-LUNG Year 2 SGA [ERN-LUNG]
The European Commission has established “European Reference Networks” (ERNs). The ERN for rare pulmonary diseases is ERN-LUNG. This is a Network of European Healthcare Providers (HCPs) dedicated t...
The European Commission has established “European Reference Networks” (ERNs). The ERN for rare pulmonary diseases is ERN-LUNG. This is a Network of European Healthcare Providers (HCPs) dedicated to ensuring and promoting excellence in care and research to the benefit of patients. ERN-LUNG’s vision is to be a European knowledge hub for rare respiratory diseases and to decrease morbidity and mortality from rare respiratory diseases in people of all ages. ERN-LUNG is a non-profit, international, professional, patient-centric and scientific network and it is committed Europe-wide and globally to the prevention, diagnosis, and treatment of rare respiratory diseases through patient care and advocacy, education, and research.
ERN-LUNG is currently made up of 60 centres from 12 countries, focused on rare respiratory diseases and is grouped in 9 Core Networks representing the diversity of diseases and conditions affecting the respiratory system. The current Core Networks (sub-thematic areas) are: Interstitial lung diseases (ILD), Cystic fibrosis (CF), Pulmonary hypertension (PH), Primary ciliary dyskinesia (PCD), Non-CF bronchiectasis (NCFBE), Alpha1-antitrypsin deficiency (AATD), Mesothelioma (MSTO), Chronic lung allograft dysfunction (CLAD), and Other rare lung diseases.
ERN-LUNG Year 2 programme will now focus on using the established structures to offer services to patients and medical professionals throughout the European Union. ERN-LUNG will start using and improving the CPMS to the best of patients and colleagues. In accordance with the five-year plan the Network will add more supporting partners, associated partners and – if the next call should be published during this year – to add more members to the network as to cover all Member States of the EU. The network will continue to seek funding possibilities to improve the quality of care offered in the area of rare diseases of the respiratory system.

Start date: 01/03/2018 - End date: 28/02/2019
Keywords : [ Ern ] [ Lung ] [ Respiratory System ]

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: Ern
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
Topic: Ern
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
Topic: Ern