Jan 11, 2021, 1:25 PM
NZ Herald  Rare illness charity at risk

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

Two years after its annual government grant was halved - to $60,000 - the head of Rare Disorders New Zealand says they are struggling to make ends meet.

"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.


Link to full NZ Herald story


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