Rare Disorders NZ: April update

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Read Flynn's story

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The petition has been referred to the Health Select Committee and our collective will prepare a written submission explaining the issues and opportunities available to make New Zealand Fair for Rare.  

Some other highlights over the past two months include meeting with Minister Little, completing a Ministry of Health Quarterly meeting on data and digital, attending the Mental Health Commission Launch and invitation to the Health and Disability Announcement.  

RDNZ also has the potential of presenting to the Mental Health Commission, PHARMAC review panel and the Health, Wellbeing and Social Services caucus committee.

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Nga mihi,

Lisa Foster

RDNZ’s collective petition calling for urgent reform of the health system to include all people living with a rare disorder was handed over at Parliament.

Supporters came from all over New Zealand to Wellington to join the call for a National Rare Disorder Framework. Sue Haldane, mum and advocate, fronted the petition for reform which gathered more than 8,200 signatures.

Sue and RDNZ CE Lisa Foster presented the petition to Dr Liz Craig MP on behalf of the 300,000 New Zealanders living with a rare disorder.

"A huge thank you to everyone who joined us at Parliament to show our government that Kiwis living with a rare health condition deserve equitable treatment," says Lisa. 

"New Zealand lags behind most OECD countries in supporting those with rare disorders. It's time to take rare disorders seriously."

Read more on our website

RDNZ CE Lisa Foster, Chair James McGoram and 22Q mum Sue Haldane met with the Health Minister Andrew Little on 1 March on behalf of the 300,000 New Zealanders living with a rare disorder.

“Our meeting with Minister Little provided a fantastic opportunity to express the need for equity for people impacted by rare conditions,” says Lisa.

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“Minister Little stated he will get back to RDNZ regarding next steps so we aim to keep in close contact with his office,” says Lisa.

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NZ Herald - Sliding around in the dark: What it's like to have a rare disorder in New Zealand 

Radio NZ's The Detail - Battling a rare disorder - and the health system

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The petition has been formally presented at Parliament and has been referred to the Health Select Committee. Rare Disorders NZ will provide a written submission to explain the issues and solutions. 

We will work with our collective of support groups to develop a plan for the next phase of the campaign.