Patients and Families
TransplantChild helps patients and family members who are going through or have gone through the complicated process of paediatric transplantation. The network works to improve the care of patients with this condition. Patients and their families are very involved in the network activities.
TransplantChild is currently formed by 40 healthcare providers from 21 European countries. ERN TransplantChild works to improve the quality of life of patients with paediatric transplants through six different strategic areas. The activities of the network involve European professionals with high expertise in this complicated condition.
Is a European Reference Network (ERN) for Paediatric Transplantation, it focuses on both Solid Organ Transplantation (SOT) and Hematopoietic Stem Cell Transplantation (HSCT) which are low-prevalence and complex conditions that require highly specialized expertise and resources. In ERNs medical knowledge and expertise travel rather than patients, using a dedicated IT platform and telemedicine tools to review a patient’s diagnosis and treatment.*
*Allocation of/and access to organs for the purpose of organ transplants is not included in the network scope as established in the Directive 2011/24/EU
TransplantChild Strategic Areas
Knowledge and Networking
Knowledge management is a systematic and organised approach to making relevant knowledge visible and widely accessible by identifying and mapping existing intellectual assets as well as creating new knowledge within the organisation.
Multidisciplinary research approaches promoted from the HCPs carrying out paediatric transplantation will provide clear benefits and understanding of the uptake and costs would be useful in health care planning.
The development of clinical practice guidelines (CPG) is an essential tool for improving clinical care and to facilitate knowledge acquisition from routine practice as well as for the development of formal clinical investigation.
Quality and Safety
Effective quality management at ERN level must recognise the contributions and the needs of all partners in the process, from the medical experts and care personnel to the patient and family members, the analysts and interpreters of results.
Education and training
It is necessary to develop a common education and training strategy that centres on these topics. This area focuses on providing best education and training programmes for professionals, nurses and patients and families.
European Reference Networks
ERN are 24 virtual networks involving healthcare providers across Europe for sharing knowledge in the patient’s diagnosis and treatment. They aim to tackle complex or rare medical diseases or conditions that require highly specialised treatment and a concentration of knowledge and resources.
From the TransplantChild Dissemination WG we are aiming to gather testimonies from patients from all around Europe.In some cases, receiving a transplantation is the only treatment for a person living with a Rare Disease, but paediatric transplantation is a highly...
Monday, July 5
Thursday, July 18
CPG WG meeting
Friday, August 1
Q&S WG meetingg