Rare Disorders NZ

Rare Disorders NZ

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

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.

CALL FOR ACTION

Rare Disorders NZ, and the support groups we represent, are calling for acknowledgement and awareness of the common challenges faced by people living with a rare disease, along with a commitment to address these challenges through the development of a New Zealand National Rare Disorder Framework. We want inclusion of patients and clinicians in decision-making processes, consideration of a wider definition of patient quality of life, and impact of rare disorders for carers.

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.

Read more

Latest donations

Lusia
Lusia 14 hours ago    Tough mudding for rare funding
$5
Simon
Simon 1 day ago
Keep up the pressure for fairness and equality.
$100
Richard and Arleigh
Richard and Arleigh on 21 May 2022
Thank you for your work to get all New Zealanders the health care they deserve.
$100
Guest Donor
Guest Donor on 01 Mar 2022
$50
Rare Disorders NZ

Thank you so much for your kind donation and support.

Rare Disorders NZ
Sarah
Sarah on 01 Mar 2022
Thank you, much love.
Private
Rare Disorders NZ

Thank you so much for your kind donation Sarah

Rare Disorders NZ

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Created by, and paying to a verified bank account of, Rare Disorders NZ (Charity)
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A Registered Charity has legal recognition under the Charities Act 2005.
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Donations of over $5 are eligible for a New Zealand charitable giving tax credit.
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