A Ministry of Health decision to reduce funding for the New Zealand Organisation for Rare Diseases [NZORD] leaves it with an uncertain future, its chief executive says.

About 337,000 Kiwis are estimated to have a rare disease, more than the total number of people with diabetes in New Zealand, but NZORD's funding is to be reduced over three years.

Chief executive Dr Collette Bromhead said the Government's 50 per cent share of funding for the organisation, $120,000, was crucial for it to function and a reduction to $60,000 by 2021 would be an insurmountable shortfall.

"We have made the case that we are a disability information and advisory service and we should be funded as such and that has fallen on deaf ears."

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Bromhead said she would have to hire a full-time staff member to try to find funding from trusts, charities and the public to keep the organisation going and it was not feasible.

She was furious it took questions from the Herald to prompt written confirmation of the decision which she had been trying to clarify with the ministry since February.

At a meeting with two Labour party Health Select Committee members that month they indicated the $120,000 per year the ministry has been providing to NZORD for 15 years, would not continue past June.

On May 1 National Screening Unit group manager Astrid Koorneef told Bromhead a proposed diminishing contract was being considered, reducing funding from $120,000 next year, to $80,000 and then $60,000.

However nothing was confirmed until today when Health Minister David Clark said he wanted to ensure anyone suffering from a rare disorder was treated fairly and equitably.

"I'm advised that Ministry of Health funding for NZORD was reviewed as is usual when contracts are due to expire," he said.

"The Government remains committed to funding NZORD and acknowledges the valuable service that the organisation provides to people affected by rare disorders.

"Following careful consideration the Ministry of Health has confirmed NZORD's funding will continue at the same level for the next 12 months, but will be reduced for each of the following two years."

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

He said a letter to that effect was being sent out today.

Asked if funding would end after three years, a spokesman for Clark's office said: "No – that's not the case. But we can't really talk numbers – the value of contracts is not typically released".

The Ministry of Health confirmed funding would be reduced but said the organisation was informed of the decision and had been kept up-to-date throughout the process.

NZORD chief executive Dr Collette Bromhead says patients will be the losers if the organisation has to close over reduced funding. Photo / Supplied
NZORD chief executive Dr Collette Bromhead says patients will be the losers if the organisation has to close over reduced funding. Photo / Supplied

Bromhead said NZORD would probably have no choice but to sign the contract and if it did it "couldn't complain".

"It's a way of shutting us down, keeping us quiet because we make a lot of noise."

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She said the solution left the organisation "no better off" and it will still probably have to close soon.

Bromhead had until yesterday been preparing seven different options for her board when it meets in June, including shutting down NZORD.

"The majority are looking at ways to cut staff, cut costs, and/or dissolve the organisation. Those are the types of horrendous discussions we've been having to have and it's really hard to keep staff morale up."

NZORD provides information, support and advocacy to patients with a rare disorder. There are more than 7000 different rare diseases.

"It's a significant group of people. We're a one-stop shop for people [after initial diagnosis].

"We get those patients when they're in that grip of pain an uncertainty and we connect them with the information they need in a caring and slow way. We don't rush them."

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NZORD also refers patients to support groups, research and clinical trials, and gives them an outlet to tell their stories.

"They do feel alone, that no-one is listening to them and no-one knows what they are suffering."

NZORD a lifeline for families with rare disease

Anna Sutherland with youngest son, Health, 2, who has Spinal Muscular Atrophy. Sutherland was supported by NZORD after Heath's devastating diagnosis last August. Photo / Supplied
Anna Sutherland with youngest son, Health, 2, who has Spinal Muscular Atrophy. Sutherland was supported by NZORD after Heath's devastating diagnosis last August. Photo / Supplied

When Jono and Anna Sutherland found out their one-year-old son Heath had Spinal Muscular Atrophy [SMA], they were told to go home and "Google it" by the doctor.

They did just that and were horrified to discover their third child might not survive past his fourth birthday.

Anna Sutherland said the couple were devastated and found doctors vague and unsupportive at a time when the family was struggling to come to terms with the rare disease.

"We were told we do nothing but keep him comfortable and enjoy the time we have. He's going to die. We just have to watch."

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But the Rotorua couple, who have two older sons - Jayden, 8, and Roman, 5, refused to give up.

And when they discovered the New Zealand Organisation for Rare Diseases they found the support they desperately needed.

"They treat our kids as individuals and take time to research their conditions, not to mention all the work they have put in to making sure we're doing okay," the 28-year-old said.

"Not many do that. I think it's crap they could be closing."

Through NZORD the family found the Muscular Dystrophy Association where they met other families with children who have SMA.

About 75 children in New Zealand suffer from SMA, a genetic disease affecting the part of the nervous system that controls voluntary muscle movement.

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Heath, whose mind and personality is fully functioning, has never walked or crawled. He will be two next week.