You have WHAT?

Spare a thought for people struggling with conditions that few of us understand

One in 17 New Zealanders lives with a rare disorder or disease. Life can be a struggle for them as they manage health conditions that many other Kiwis are not even aware of.

WHAT IS A RARE DISORDER?

According to Rare Disorders NZ, New Zealand has no official definition of what is considered a rare condition and there are no specific government, health-system policies or programmes in place. European measures define a disorder or disease as rare when it affects fewer than one in 2000 people.

When they’re bundled together, a range of individual rare disorders collectively affect about six percent of New Zealanders, half of whom are children.

FACTS & FIGURES

Globally, there are more than 6000 different types of rare disorders, with more being discovered each day.

Around 72% of rare diseases are genetic and present throughout a person’s life, even if the symptoms do not immediately appear.

About 95% of rare diseases have no approved drug treatments.