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Charity Summary


Charity Details

The Rare Disorders New Zealand Trust
New Zealand Organisation For Rare Disorders Trust
CC22512
9429043061419
Registered

Registration details

3/04/2008
June 30

Name change history

Name Effective Date
New Zealand Organisation For Rare Disorders Trust 3/04/2008
The Rare Disorders New Zealand Trust 15/02/2022

Address for service

PO Box 7081
Newtown
Wellington
6242
94 Riddiford Street
Newtown
Wellington
6021

Charity's other details

0272500619
accounts@raredisorders.org.nz
http://www.raredisorders.org.nz
Rare Disorders NZ
nz_ord
Linkden www.linkden.com/company/raredisorders


Organisation with a focus on the following communities:

N/A

https://www.register.charities.govt.nz/Charity/CC22512

Purpose & Structure

Charitable Purpose

To champion and amplify the collective voice of New Zealanders with rare disorders, advocating for access to world class and world leading health, disability, education and other services.

Note: The main sectors, activities and beneficiaries are bolded.

Acts as an umbrella / resource body

Makes grants to organisations (including schools or other charities), Provides services (e.g. care / counselling), Provides advice / information / advocacy

Health

Education / training / research, People with disabilities

Other (please state)

(People with rare disorders)

Legal Structure

Charitable Trusts incorporated under the Charitable Trusts Act

Annual Returns

Annual Returns are due within 6 months of a charity’s balance date (financial year-end), or a longer period if an extension has been granted.

Note: Charities that use the Tier 4 Combined Form to file their annual returns do not need to file their financial statements separately. The financial statements are included in their annual return summary.

Exemptions

This charity has been granted an exemption from filing an annual return by 31 December 2008 under Section 43 of the Charities Act 2005. The first annual return is due by 31 December 2009.

For Year Ended Due Date Date Submitted Total Income Total Expenditure Financial Statements Annual Return Summary
30/06/2025 31/12/2025 18/12/2025 $433,231 $576,168 load annual return's financial documents spinner gif
Included in Annual Return
30/06/2024 31/12/2024 16/12/2024 $509,113 $517,420 load annual return's financial documents spinner gif
Included in Annual Return
30/06/2023 31/12/2023 13/12/2023 $461,892 $385,749 load annual return's financial documents spinner gif
Included in Annual Return
30/06/2022 31/12/2022 19/12/2022 $345,028 $294,672 load annual return's financial documents spinner gif
Included in Annual Return
30/06/2021 31/12/2021 29/11/2021 $321,884 $237,460 load annual return's financial documents spinner gif
Included in Annual Return
30/06/2020 31/12/2020 14/10/2020 $272,628 $217,483 load annual return's financial documents spinner gif
Included in Annual Return
30/06/2019 31/12/2019 12/11/2019 $269,985 $282,729 load annual return's financial documents spinner gif
Included in Annual Return
30/06/2018 31/12/2018 13/12/2018 $255,268 $303,020 load annual return's financial documents spinner gif
Included in Annual Return
30/06/2017 31/12/2017 22/03/2018 $259,983 $258,852 load annual return's financial documents spinner gif
Included in Annual Return
30/06/2016 31/12/2016 28/11/2016 $302,377 $238,745 load annual return's financial documents spinner gif
Included in Annual Return

Officer Details

Officers

Officer Name Position Effective Date
Nivedita Sharma Vij Trustee 10/04/2025
Samantha Mercedes LaHood Trustee 31/01/2025
Ariane Tuapola Chair 26/09/2024
Christopher Stuart Higgins Chief Executive 1/06/2023
Awhina Netta Ramari Hollis-English Trustee 20/06/2022
James Douglas McGoram Trustee 10/03/2020
Rosemary Marks Trustee 10/03/2020
Bice Awan Trustee 31/10/2014
Martin Cordmires Hanley Trustee 1/06/2001

Past Officers

Officer Name Position Past Since
Carol Gernhoefer Trustee 26/09/2024
Stephen Robertson Trustee 27/06/2024
Joanna Lusk Trustee 14/03/2022
Gillian Brooker Greer Trustee 22/09/2021
Bronwyn Gray Trustee 9/03/2020
Michael Eccles Trustee 26/09/2019
Sue Wells Trustee 18/10/2018
Chris Higgins Trustee 14/06/2018
Lucy Elwood Trustee 20/12/2016
John Forman Trustee 15/06/2015

Charity Updates

Here is a list of all the details changed by the charity, for example adding or removing officers, amending rules, changing balance dates or updating address details.
Date Created Reference View Summary (.pdf <1MB)
8/10/2025 NOC040
29/09/2025 NOC039
31/07/2025 NOC038
14/10/2024 NOC035
2/05/2024 NOC034
25/03/2024 NOC033
25/03/2024 NOC032
9/03/2024 NOC031
1/02/2024 NOC030
4/12/2023 NOC028

Charity Documents

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Date Uploaded Document Type Reference Name

No supporting documents.