The paediatric transplantation (of solid organs and hematopoietic progenitors) has increased survival in children with end-stage disease, becoming one of the main treatment options for this population. However, there are significant challenges associated with optimising the effects of these interventions:
i)The mechanisms associated with tolerance to graft rejection;
ii) The pre-transplant -and surgical techniques and care procedures; ii) post-transplantation care;
iii) The specificities associated with this population group and type of disease;
iv) The social and economic impact of these surgeries on patients, their families and health systems.
Since these factors are key to the success of the process and a common link in various types of transplantations, there is a need to implement and standardise recent improvements in this field for routine use, directing them towards prevention, improvement of the surgical procedures themselves, treatment of chronicity and the appearance of secondary diseases associated with transplantation.
As a result of these activities, the paediatric transplantation network will achieve to increase life expectancy and quality of life of paediatric patients requiring a solid organ or hematopoietic progenitor transplantation and their families, and will provide added value,
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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.
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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.
Motivated by the spirit of bringing in expertise from different specialties and stakeholder groups, ERNICA provides a holistic approach to care for patients with rare inherited and congenital anomalies and support for their families. This takes into account the physical, emotional, social, economic, and spiritual needs of patients and their families, as well as the changing needs throughout the life-cycle. Our work is based on the strategic partnership between healthcare professionals and patient representatives involved in ERNICA that will inform all activities undertaken by the Network. The Multiannual Plan will be focused on the following objectives: 1) understanding the existing resources in the area of diagnostic and treatment, 2) improving the use of common epidemiological tools, 3) identifying the current gaps in the provision of crossborder care and e-services, 4) assessing the educational needs of patients and healthcare professionals, and 5) developing the research agenda on ICAs to address the current gaps. The attainment of these objectives will facilitate access to quality and cost-effective care and reduce inequalities in Europe.
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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.
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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.
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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.
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