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 complex process which brings forth many uncertainties for the families.
In an attempt to ease the families’ minds, we want to collect the experience of those that are or have been in the same situation.
With this in mind, we would like to ask for the cooperation of all the centres of the ERN TransplantChild in the task of gathering testimonies from patients and producing and publishing an e-book to be used as support material by the families that have to undergo a paediatric transplantation.
Download our special issue to learn more about this initiative:
This webinar was presented by the Technical Director of the Dissemination WG, Dr. Sara Mosca, from Centro Hospitalar do Porto. The webinar went live on 28th July 2022.
This webinar enlists on the series of webinars from ERN TransplantChild promoting the dissemination of insights and knowledge regarding paediatric transplantation. We are always looking for ideas and topics, if you want to know about a particular topic or, even better, can share your knowledge about a topic: please get in contact with [email protected] and we will set a date!
ERN TransplantChild 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.