On Friday 29 January RDNZ’s CE Lisa Foster, alongside three support group leads, gave an oral submission to the Education and Workforce Committee on the impact of increasing sick leave for families living with a rare disorder.

RDNZ supported our collective to submit a submission on the Holidays (Increasing Sick Leave) Amendment Bill through the creation of a template and explanation about the process. A total of 12 support groups/individuals made a submission to extend the annual entitlement of sick leave from 5 to 10 days’ paid sick leave, and shared the impact this increase in leave would have on them.

Every submission also highlighted the fact that increasing sick leave entitlements is just one small step that the Government can take to support people living with a rare disorder, but there is so much more to be done to support the 1 in 17 New Zealanders living with a rare disorder and their carers. 

We asked our collective through social media “what does more sick leave mean for you and your family?”

Here is some of the feedback shared through RDNZ’s oral submission:

“Both my partner and I being able to be at the hospital with my girl without worrying about not being paid.”

“I could finally take on a career and still be able to be home for my daughter during a flare.”

“Being able to take sick leave for myself and not get even more sick would be amazing!”

RDNZ has written to the MPs and members of the Committee and will keep them updated on our collective campaign for a National Rare Disorder Framework. 

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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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