Rare Disorders NZ

Rare Disorders NZ

Rare Disorders NZ provides New Zealand's central starting point for information about rare disorders.

Wellington

Rare Disorders NZ is the connector hub for people affected by rare disorders and their families to find essential information and links to rare disease support groups.

Rare Disorders NZ is the only umbrella group for rare disorders in New Zealand and provides a strong common voice to advocate for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition - around 6% of the population.

Rare Disorders NZ is a co-designing partner, working with Manatū Hauora - Ministry of Health on New Zealand's first Rare Disorders Strategy and is ensuring the lived experience is informing the development of the strategy.

For the Rare Disorders Strategy to deliver on its intentions to ensure the health system responds and relates equitably to rare disorder patients and improves their quality of life, it will need to include a minimum set of actionable items to drive change. Rare Disorders NZ has identified four essential implementable actions we want to see incorporated into the strategy:

- Rare and Undiagnosed Disorders Centre of Expertise,

- Single barrier-free pathway to rare disorder medicines,

- Incorporating coding of rare disorders in the classification system of diseases

- Rare Disorders NZ is a key enabler for the Strategy's implementation.

Rare Disorders NZ is working hard to ensure these actions are included into the strategy to ensure it leads to meaningful change in the health system for people living with a rare disorder.

More about us

Rare Disorders NZ is the connector hub & collective voice for people affected by rare disorders and their families. We advocate for an equitable health system that works for the 300,000 Kiwis with a rare condition - around 6% of the population.

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Latest donations

Kalavati Narsai
Kalavati Narsai on 09 Sep 2024
We appreciate and thank all our family and friends who made thoughtful donations to Rare Disease NZ in memory of Kalavati Narsai.
$3,540
Rare Disorders NZ

Kia ora family and friends of Kalavati Narsai, Rare Disorders New Zealand extends our deepest condolences for your loss and our gratitude for your generous donation. Your support is invaluable to us and makes a significant difference in the lives of individuals and families affected by rare disorders. If you would like to be kept informed about the impact of your generous donation, please email us at: gemma@raredisorders.org.nz. Thank you for your compassion and generosity. Together, we can make a lasting impact on the lives of those with rare disorders. Ngā mihi, Rare Disorders New Zealand

Rare Disorders NZ
Guest Donor
Guest Donor on 13 Aug 2024
In memory of Kalavati Narsai.
$25
Rare Disorders NZ

Thank you so much. We would like to contact Kalavati's family to thank them and offer our condolences, please pass on our email enquiries@raredisorders.org.nz if possible.

Rare Disorders NZ
Guest Donor
Guest Donor on 04 Aug 2024
In loving memory of Kalavati Narsai
Private
Rare Disorders NZ

Thank you, we appreciate your donation.

Rare Disorders NZ
Guest Donor
Guest Donor on 04 Aug 2024
In memory of Kalavati Narsai(Kamu)who passed away so suddenly on the 30th July.She will be so missed.Rest in peace now Kamu.
$50
Rare Disorders NZ

Thank you so very much.

Rare Disorders NZ
Guest Donor
Guest Donor on 04 Aug 2024
In loving memory of Kalavati Narsai
$25
Rare Disorders NZ

We appreciate your donation - thank you.

Rare Disorders NZ

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