Children with (very) severe, multiple (intellectual and physical) disabilities ((Z)EMB) or children with a progressive neurodegenerative metabolic disease (PNS) that causes them to be severely limited, often have a shortened life expectancy and, according to the WHO definition, already need from diagnosis palliative care. This group of children makes up the majority of the estimated 5,000-7,000 children requiring palliative care annually.

Knowledge Center for Palliative Care for Children and those involved in the NVAVG have been signaling for years that the attention paid to child palliative care for this target group falls short in practice. That is why a national working group has worked intensively on a vision on palliative care especially for children with (Z)EMB or PNS.