Organisation supporting New Zealanders with rare diseases faces major funding cut

Around 337,000 New Zealanders suffer from rare diseases, but the organisation that supports them is facing a major funding cut.

The New Zealand Organisation for Rare Disorders is set to have its Government funding slashed from $120,000 to $60,000.

"It would effectively eliminate our ability to effectively provide support, advocacy, and information for [those] patients who suffer from rare disorders," chief executive Dr Collette Bromhead told 1 NEWS.

"Quite often when people hear 'rare' they think 'oh rare, it doesn't affect me.'"

"But there are 7,000 rare disorders affecting eight per cent of the population at any time. And that actually is more people in New Zealand than have diabetes."

Dr Bromhead says patients are often told by their doctor to "go home and google" their rare condition.

In a statement, Minister of Health David Clark said the Ministry would continue to fund the organisation for the next year, "but it will be reduced for each of the following two years."

"This gives the Organisation time to adapt and ensure it remains sustainable into the future."

Organisation that supports New Zealanders with rare diseases faces major funding cut Source: 1 NEWS