Paediatric palliative care funding in Budget 2026 positive news says Rare Disorders NZ

Rare Disorders NZ welcomes the Minister of Health’s announcement today that Budget 2026 will include significant investment in paediatric palliative care.

Around a third of children with a rare disorder die before their fifth birthday, and until now three out of four dying children in Aotearoa New Zealand have not been able to receive any specialist palliative care. The only access families have had to paediatric palliative care have been at Starship or through the charity Rei Kotuku in the lower North Island.

“At the most difficult time of a family’s life, it is so important they have the support they need, where they need it. We are really pleased there is finally recognition of the value in investing in paediatric palliative care, and we see this as an important first step towards paediatric palliative care becoming available nationwide,” says Chris Higgins, Chief Executive of Rare Disorders NZ.

The announcement says the new funding of $15.5 million over four years will go towards establishing two dedicated specialist paediatric palliative care teams in the North and South Islands respectively, as well as a national coordination service and one registrar training position each year.

“We’re pleased funding will also be going to specialist workforce development to ensure this area of expertise continues to grow, and we hope this will lead to improved regional access to expertise over the coming years,” says Higgins.

“We’re also thrilled that Rei Kotuku will be receiving funding to continue their important work. We know how valuable their services have been to so many families in the rare disorder community and we look forward to continuing to collaborate with them and government agencies to ensure rare disorder families are well supported.”

ENDS.