Rare Disorders NZ

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

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  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.


Latest donations

Nancy Leilani
Nancy Leilani on 01 Apr 2021
$10
Rare Disorders NZ

Thank you for your support.

Rare Disorders NZ
Richard Stein, MD
Richard Stein, MD on 08 Mar 2021
Thank you for the work you do!
$500
Rare Disorders NZ

Thank you for your ongoing support, we really appreciate it - alone we are rare; together we are strong!

Rare Disorders NZ
Guest Donor
Very proud of you aaron well done.
$100

Who's involved?

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Created by, and paying to a verified bank account of, Rare Disorders NZ (Charity)

Registered Charity A Registered Charity has legal recognition under the Charities Act 2005.
Tax credit Donations of over $5 are eligible for a New Zealand charitable giving tax credit.
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