Having undergone a heart transplant at just 6 years of age, Íñigo, now 8 years old, exemplifies courage. Two years on, Íñigo speaks of his life-changing experience since receiving the transplant. He encourages us to see the positive side of things and to not let circumstance restrain us, as Íñigo already has plans to change the world. His testimony is shown in a short video which calls for support for children affected by rare diseases or complex conditions. The call is accessible to the public but is particularly addressed to the ERNs to promote cross-talks on paediatric conditions.

Íñigo‘s operation occurred in La Paz University Hospital, Coordinator Centre of ERN Transplantchild. ERN TransplantChild has identified crosslinks with every network treating paediatric patients. This is why a video was created with the intention to promote collaboration across all Paediatric ERNs. Crosstalk between ERNs is an important task that could help the treatment of rare diseases and conditions. Therefore, it is necessary that the networks start working together in overlapping areas, as this has the opportunity to improve healthcare.

Ana Duato, a goodwill ambassador for UNICEF and a well-known Spanish actress, has shown her interest in the work of European Reference Networks with children suffering from rare and low prevalence complex diseases. Her constant commitment to the future of children has driven her to participate in different projects aimed at improving the lives of children across national borders. She collaborated with ERN TransplantChild, coordinated from La Paz University Hospital in Madrid, to produce this video and showcase the importance of working together to provide children like Íñigo, the protagonist, with the care that they deserve.

Íñigo and Ana, together, express the importance of listening to the experiences and voices of children and their families: their opinions matter. Moreover, the campaign for the paediatric ERNs to join forces and work together for the future of children. The video ends with the motto designed for this project: “ERNs together for their future”.