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).
  • 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.

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.

LDNZ Strategic Plan

Here’s what we produced as the LDNZ Strategic Plan for 2015–2017. It remains relevant to the years ahead. Some achievements have been made. Much is yet to be done.

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 Annual Reports

We aim for transparency and we report as much as possible. Follow this link to our annual reports page.

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.

Contact Us

Chairperson:
John Forman
125 Cuba St
Petone
Lower Hutt City
New Zealand
Ph 027 240 3377
Email john.forman@xtra.co.nz