A lifeline for thousands of Kiwi families fighting crippling rare disorders fears closure due to financial woes.

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"Closure is a real fear, we have no guarantee of surviving these next few years - it's not a very confident picture," said chief executive Lisa Foster.

"If we don't survive as an organisation what is that saying to all those families? That you don't matter?"

Health Minister Andrew Little told the Herald he was "sympathetic" to these families and remained committed to ensuring they received a good level of support.

Little could not say why the organisation's funding was cut or make any specific promises to ensure its survival.

"I am willing to engage with the community to learn more about the challenges they face and I look forward to doing so in due course," he said.

 

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Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

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