Pediatric palliative care: a Giro d’Italia to combat ignorance and disinformation

What does it mean to be palliative? For Filippo Arnaudo25 years old, graphic designer, going around the world with the « beast », the motorized wheelchair his life and travel companion, and speak with such irony about his rare form of muscle dystrophy. Federica Toffanin and Matteo Zandali They are the parents of Lavinia, born with a very rare genetic disease of the lisomial accumulation, the mulespidosis 2. The little girl, also as Filippo followed in thePadua Hospice of Paduahe left in 2020. But they decided to continue to be palliative with a social page (on the way to Lavinia) to claim as parents « for our children the dignity of being able to have all possible treatments, but never, never one more ».

Palliativity: an « contagious » virtue

Is palliativity « contagious »? Yes – and it is a good – to judge from what has grown, year after year, the tour of the pediatric palliative care, that of palliativity is quintessence and showcase. What is the Giro d’Italia of pediatric palliative care (GCPP)? The largest national event dedicated to the promotion and raising awareness of pediatric palliative care (CPP), organized by Maruzza Foundation That four years ago collected and translated the instances of the « lovers of the pediatric palliative care » on the initiative.

It is a group of doctors, nurses and other socio-health professionals, gathered in an informal self-constituted network in 2020 which has over 210 active volunteers from all over Italy. «We know that, in our country, there is still a lot of ignorance on palliative care – he explains Elena CastelliGeneral Secretary of Fondazione Maruzza -. In the sense that it was not clear what they are and we want to create a shared culture on this ».

The ignition of the « torches »

And so for the fourth edition, The « torches » of the Giro d’Italia were turned on in the-style place of pediatric palliative care: Padua where the first structured CPP experience in Italy took shape, thanks to the pioneering commitment of the Professor Franca Beniniwhich with constancy and determination has contributed to opening the Veneto Regional Center for pediatric palliative care.

GCPP 2025 plus events, more participation, more awareness

After the success of the first three editions – which have seen the participation of over 45,000 people, with 166 events organized in 17 Italian regions and the involvement of more than 220 associations – the Giro d’Italia of the 2025 pediatric palliative care is even richer and more articulated. There will be about 70 scientific, cultural, sporting, training and institutional initiatives designed to raise awareness and inform an ever wider audience throughout the « boot ». The tour will end on June 15 in Palermo, With a great event in the square, where the torches will find themselves to witness the commitment shared in affirming the right to care for all children affected by chronic and incurable disease and for their families.

The theme of the GCPP 2025: « Become palliative! »

The theme chosen for this edition, « becomes palliative », is a clear invitation to be an active part in the dissemination of correct information and a new culture of care. Being « palliative » means being aware and responsible citizens, Able to promote a better understanding of what CPPs are, how they work and what a fundamental role do professional and family figures play children who take care of children with incurable diseases. «The success of the first three editions of the Giro confirmed us how strong the desire, throughout the country, is of knowing, understanding and supporting pediatric palliative care – subliena Silvia Lefebvre D’Ovidiopresident of the Maruzza Foundation – with the 2025 edition we want to take one step more: the theme « becomes palliative » is a direct and inclusive invitation, which calls every citizen to become « protagonist » in the spread of a new culture of care ».

The situation in Italy: the Palliped 2022–2023 study

An updated picture of the situation in Italy comes from the Palliped 2022–2023 studio, Published on the Italian Journal of Pediatrics in January 2025. In the last three years, The percentage of children followed by CPP specialist services went from 15% to 25%. However, the coverage still remains partial and uneven: currently only 18 specialist centers are active in 14 regions and 2 autonomous provinces, while 8 regions do not yet have a regional reference center dedicated to pediatric palliative care, capable of coordinating all the necessary services in the area. As he points out Gianlorenzo ScaccabarozziProfessor of Palliative Medicine – University of Milan Bicocca, President of the Section O – Palliative Care and Pain Therapy – of the Ministry of Health in the three -year period 2022-2025 – «In our country Sone 10,625 children who need palliative care every year. So absolutely manageable ».

A significant turning point and 35 million euros are needed

But a significant turning point is needed to do this. « The regional network of palliative care and pediatric pain therapy is present in 5 regions and 2 autonomous provinces (Veneto, Liguria, Friuli Venezia Giulia, Emilia Romagna, Basilicata, Pa Trento and Pa Bolzano). However, only two regional networks, that of Veneto and that of Liguria have the criteria provided for accreditation. In particular continuity of care are not always active on 24 hourscoverage throughout the reference territory, the presence of dedicated specialist teams. Pediatric hospines are present in 9 regions. The same must be inseparable by the development of networks that are coordinated by the specialist centers of reference in the hospital. Hospice cannot be « happy islands » but part of a public governance path Able to guarantee a total taking charge that can last a long time, up to the adult age ».

Not only that. It is necessary to invest in resources, as explained by Professor Scaccabarozzi: «  To ensure an effective operation of the networks, it is therefore necessary to have a team with dedicated staff. Need: 22 million for the reference specialist centers, which ensure the coordination of networks, 13 for the management of hospice. The total annual cost compared to current needs is 35 million in total».
For its part, The Minister of Health, Orazio Schillaci He underlines that « pediatric palliative care represent a fundamental pillar of a right and inclusive health system. Offering relief from suffering, quality of life and global support to children suffering from incurable pathologies and their families is not only a moral imperative, but a commitment that we must make ourselves as institutions and as a community. For this – continues the minister – also with the Budget Law 2025 we have provided for an increase of 10 million euros of the Palliative Care Fund. This is a measure that confirms the attention of the government to this sector and that will allow us to further enhance the organization and quality of assistance « .

Padua, cradle of pediatric palliative care in Italy

When no one believed it yet, Padua was the first city in Italy to develop a structured and recognized model of CPP, becoming a national reference point for assistance to children with incurable pathologies and their families.

« The Padua pediatric hospice is somehow the national symbol of health and human attention that a society and a health system that want to say civilians have the moral obligation to ensure – says the Councilor for Health of the Veneto Region, Manuela Lanzarin: « It is the ideal place to kick off this completely particular tour of Italy, which contains all the meaning of solidarity and the desire to be close to children suffering and their families. In addition – he concludes – in a hospice, in addition to great human values, there are great medical and nursing professionalism, which complete a picture where the heart and professionalism merge into a unicum « .

To underline the value of this experience is Giuseppe Dal Bengeneral manager of the Hospital-University of Padua: «In Padua the first pediatric hospice in Italy was born and Today the Region is making a new structure Even more welcoming, bright and child -friendly. We deeply believe in this project and we hope it can be a model ».