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 Name

Our registered name is Lysosomal Diseases New Zealand (we also have an alternative long title as The New Zealand Lysosomal Storage Diseases Trust)

Our Status

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)

Who We Are

Our board of directors.

Our Registered Office

125 Cuba Street, Petone, Lower Hutt City.

Our Objectives

• 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.

Tax Exemptions

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 achievements during 2008

Follow this link to read the annual report for 2008 (MS Word document). It gives an overview of our activities over the last year, significant achievements in that time and a look ahead to challenges for the future.

Also available are the annual reports for 2004, 2005, 2006 and 2007.

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.

Raising Money

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.

Contact Us