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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This proposal is to support the delivery of ERN-RARE-LIVER, the European Reference Network (ERN) in rare hepatological diseases. Liver disease is a major and growing problem in the European population. The expansion in clinical need because of increasing disease impact has not been matched by expansion in the clinical workforce leading to a relative lack of expertise. The challenge is particularly acute in rare liver disease; a setting in which Europe leads the world in terms of academic innovation. The ERN model is particularly attractive in the setting of rare liver disease as it will foster the development of ‘virtual critical mass’ across European centres with benefits in terms of clinical care deliver, teaching and training and research capacity. Supported by the relevant professional societies (The European Association for the Study of the Liver EASL) and the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN), the community of our field. Covering all ranges, from paediatric to adult through transitional care, ERN-RARE-LIVER has 3 themes reflecting important disease groupings (Autoimmune Liver Disease; Metabolic, Biliary Atresia and Related Disease; Structural Liver Disease) with a coherent plant to increase both our disease scope and geographical coverage. We will improve patient care directly through our work on guideline optimisation, care pathway development and the implementation of a model of “TELE-BOARDS” with multi-centre discussion of complex and challenging cases. We will also facilitate improvement in diagnostics capacity through development of quality assurance programmes in serology and histopathology, and case referral pathways to support centres lacking diagnostic technology. Our training and research programmes will enhance care delivery through increase in the trained workforce and knowledge respectively.
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Second Annual work Program for the ERN TransplantChild - Transplantation in Children, both Solid Organ Transplantation and HSCT
TransplantChild is one of the ERNs approved by the European Commission.
Transplanted children generates a lifelong chronic condition or `disease´, mostly imposed by the immunosuppression.
The new lifelong medical condition is common in many aspects to all transplanted children.
TransplantChild applies a multi-disciplinary and patient-centered approach, identifying common areas of clinical and therapeutic innovation with the widest possible applicability
Without leaving aside other more specific aspects of each type of transplant
Improving areas:
- Improvement of the prevention mechanisms as well as surgical, preparative, care procedures and other technical issues.
- Prevention of complications and secondary diseases related to transplantation.
- The mechanisms associated with graft tolerance vs rejection.
- Psychosocial care, education and other aspects related to quality of life.
- Adulthood transition.
- The impact on social and sustainability issues of these processes;
- The patients and families’ empowerment.
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This proposal is to support the delivery of ERN-RARE-LIVER, the European Reference Network (ERN) in rare hepatological
diseases. Liver disease is a major and growing problem in the European population. The expansion in clinical need
because of increasing disease impact has not been matched by expansion in the clinical workforce leading to a relative lack
of expertise. The challenge is particularly acute in rare liver disease; a setting in which Europe leads the world in terms of
academic innovation. The ERN model is particularly attractive in the setting of rare liver disease as it will foster the
development of ‘virtual critical mass’ across European centres with benefits in terms of clinical care deliver, teaching and
training and research capacity. We are also supported by the relevant professional societies, the European Association for the Study of
the Liver (EASL) and the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN), who are the
communities of our field. Covering all ranges, from paediatric to adult through transitional care, ERN-RARE-LIVER has 3
themes reflecting important disease groupings (Autoimmune Liver Disease; Metabolic, Biliary Atresia and Related Disease;
Structural Liver Disease) with a coherent plant to increase both our disease scope and geographical coverage. We will
improve patient care directly through our work on guideline optimisation, care pathway development and the implementation
of a model of “TELE-BOARDS” with multi-centre discussion of complex and challenging cases. We will also facilitate
improvement in diagnostics capacity through development of quality assurance programmes in serology and histopathology,
and case referral pathways to support centres lacking diagnostic technology. Our training and research programmes will
enhance care delivery through increase in the trained workforce and knowledge respectively.


This proposal supports the European Reference Network (ERN) in rare hepatological disease. Liver disease is a major and growing problem in the European population. The expansion in clinical need because of increasing disease impact has not been matched by expansion in the clinical workforce leading to a relative lack of expertise. The ERN model is attractive for rare liver disease as it fosters the development of "virtual critical mass" across European centers with benefits in terms of clinical care delivery, teaching, training and research capacity. The ERN covers both adult and paediatric patents in the disease groupings (Autoimmune Liver Disease; Metabolic Biliary Atresia and related diseases; Structural Liver Disease) with a coherent plan to increase both disease scope and geographical coverage. Patient care will be improved through work on guidelines, care pathway development and the use of the Clinical Patient Management System for multi-centre discussion of complex cases. We also facilitate improvement in diagnostics capacity through development of quality assurance programmes in serology and hisopathology and case referral pathways to support centres lacking diagnostic technology. Our training and research programmes will enhance care delivery through increase in the trained workforce and knowledge respectively.
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