This page gives details of our organisation’s formal status, board of directors, our objectives and tax exempt status, and a link to the latest annual report.
Our registered name is Lysosomal Diseases New Zealand (we also have an alternative long title as The New Zealand Lysosomal Storage Diseases Trust)
- We are a registered charitable trust with a certificate of incorporation under the Charitable Trusts Act 1957, issued by the Ministry of Commerce on 18th April 2000 (certificate WN/1032411).
- We are registered as a charitable entity under the Charities Act 2005 on 27th May 2008. Our registration number is CC24962.
Who We Are
Our board of directors.
Our Registered Office
125 Cuba Street, Petone, Lower Hutt City.
- To improve contacts, information and support among people affected by lysosomal storage diseases, and their families, within New Zealand,
- To support and advocate for accelerated research into the causes and treatment of lysosomal storage diseases, and for improvements to the clinical care of affected people,
- To promote the education of families, clinicians and others involved in the care and support of affected people,
- To build links with overseas families, clinicians, researchers and support groups, to support local knowledge about these diseases, and advance the objectives of the trust,
- To support and advocate for the establishment of medical, testing, screening, genetic and other specialist services to meet the needs of affected people and their families,
- To work co-operatively with other groups and individuals interested in rare diseases to promote common interests,
- To hold money or property in trust for any unincorporated support groups for individual lysosomal storage diseases,
- To raise money to achieve these aims.
LDNZ Strategic Plan for 2015–2017
- In the LDNZ Strategic Plan for 2015–2017 you will find information about the future direction of LDNZ and the issues that we are working on to ensure better health and disability services for patients and their families affected by these diseases.
Our status as a Charitable Trust provides for tax rebates for donations of $5 or more from individual donors. Public companies qualify for deductions of cash donations. Qualifying gifts are exempt from Estate and Gift Duties and property conveyancing fees.
Our Annual Reports
- LDNZ has completed the new accounting and performance reports that are required to be completed by charities. Our annual reports will now be part of the performance report: performance report 2017, performance report 2016.
- Also available are the annual reports for 2004, 2005, 2006, 2007, 2008, 2009, 2010, 2013, 2014, 2015.
- Follow this link to the special 12 year report published by LDNZ in February 2012. This report covers the annual reporting period of 2011, in addition to providing an historical record of events since LDNZ was established.
Networks and Advocacy
Our approach is based on the view that good networks among families lead to improved information and better support, and that organised lobbying by families will hasten the research effort and improve the clinical care. These networks are extended to include clinicians and researchers who support our objectives. It is our view that rare diseases do not get a fair share of resources for research, or in health care planning, so advocacy is required to address the imbalance.
As for any charitable organisation, there is the task of raising money to contribute to specific research initiatives, build local support networks and international contacts, improve information flows, and produce newsletters.
Contact us if you wish to know more, to be on our mailing list, or to contribute money or effort.