Global research has shown New Zealand has the highest mortality rate from motor neurone disease in the world with 120 Kiwis dying from the disease each year.

There are more than 800 kiwis are living with the disease, however, Motor Neurone Disease New Zealand's Carl Sunderland told Kate Hawkesby we don't know why so many are dying. 

"There's no conclusive evidence of why. There could be a variety of reasons but it is quite alarming that we do have such a high rate."

The early diagnosis of the disease is incredibly important but Kiwis face extremely long waiting lists to see specialists."

"One of the issues you have got with motor neurone disease is that it takes a long time to diagnose because to give someone basically a terminal diagnosis every other option has to be ticked off first. So getting in to see a neurologist early is the key."

A summit on brain health - is being held at AUT in Auckland today but, in general, Sunderland says there is not enough research into the disease.

"There is not that much research happening in New Zealand and there really does need to be a bit more."

He said the impacts of motor neurone disease is largely unknown in New Zealand. 

"Unless you're actually effected by it I think the awareness is actually quite low."

"It is seen as a rare disease because the actual number of people living with it at any one time in New Zealand is reasonably low, compared to other disease, but the diagnostic rate actually is quite high - it's the third highest neurodegenerative disease that is diagnosed in New Zealand after Parkinson's and Alzheimer's."