Mar 29, 2021, 1:00 AM
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Last Wednesday 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."

Before the presentation, members of the public were invited to take their chance and spin the Rare Roulette wheel to learn more about the systemic discrimination and barriers facing the 1 in 17 people living with a rare condition. Each of the twelve specific disorders featured on the wheel had a representative who spoke on the day about their disorder and the barriers within the health system in New Zealand, including diagnosis, access to treatment and medicines.

“We met with Health Minister Andrew Little on 1 March 2021 to discuss the urgent issues and opportunities for equity. Now is the time for action to ensure our health system is fair for rare. With no current recognition or seat at the table with Government, how can there be authentic inclusion of the rare disorder community?” says Lisa.

After handing over the petition, Sue, Lisa and some support group leaders went to the public gallery to view the petition being presented to the House. The petition will be considered by the Petitions Committee which will decide on what actions it wants to take and whether it will lead to a written submission or a hearing. 

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