Participants wanted for survey on rare health disorders

People living with rare health disorders are being asked to take part in a nationwide survey.

The goal is to find out how many people are living with these disorders, and what they are. 

Jesse speaks to Lisa Foster, the chief executive of Rare Disorders NZ.

The survey is meant to draw more attention to those with rare disorders in Aotearoa and their needs for care.

Rare Disorders NZ generally defines a disease or disorder as rare when it affects less than 1 in 2000 people, following international definitions. 

That can still add up to a lot of people who have a rare disorder, Foster said.

"A rare disorder isn't actually that rare, that's the first point to get over really. It's a community of scale."

"And that's because a rare disorder affects 1 in 2000 people and there's a lot of them, so that ends up being 1 in 17 people have a rare disorder, they just have different types of rare disorders."

Foster said that such disorders are often "invisible" in the health network.

"There's no capture of data or information so when it comes to resourcing or financing or disability or inclusion, we do not have any kind of system that actually can see us."

Foster said New Zealand is lagging behind other countries.

"That also adds to the urgency."

Rare disorders can include unusual cancers, cystic fibrosis or spinal muscular atrophy, a leading genetic cause of infant death.

Another is a disease known as "22q," or DiGeorge syndrome.

"It leads to a complex array of symptoms and some aggressive behavioural aspects too occasionally which can lead to really big problems socially for that person and for their family."

Foster said the goal of the survey is to improve care.

"With recognition we hope we could get improved diagnosis or earlier treatment and better care for the people who have these conditions and then that obviously leads to better outcomes for society as a whole."

"Please just head over to our website."

The survey runs from now until 1 December.