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Contact Us

Secretary:
Jenny Noble
16 Woodleigh Place
Ohauiti
Tauranga
New Zealand
Ph 07 544-8868
Email jenny.noble@xtra.co.nz

Welcome to the website of LDNZ

LDNZ is a support group for families affected by lysosomal storage diseases.

In this website you will find

  • a description of lysosomal storage diseases
  • details on our group, including our objectives, charitable status and activities
  • stories prepared by affected families, including links to some personal websites
  • contact details for lysosomal storage disease support groups around the world
  • copies of our newsletters and conference reports
  • links to major pharmaceutical companies involved in developing and producing therapies for lysosomal storage diseases

Lysosomal storage diseases

Lysosomal storage diseases are inherited genetic defects that result in an enzyme deficiency, which prevents cells from performing their natural recycling function. This leads to a variety of progressive physical and/or mental deterioration. Approximately 180 New Zealand families are currently affected. Find out more here.

Visit Our Care Pages

Care pages are personal websites that can help families communicate with friends and loved ones during times of illnes and injury. They are a place where a family can place messages and news in a journal and share photos, and where friends and family can provide support and advice by placing messages

We have three families with care pages (for four children). Please visit the pages to share in their stories.

Contact us

If you have any questions or comments, please send us an e-mail.

Latest Additions

Conference Report

Read Joanne Labedzki's report on the National Tay Sachs and Allied Diseases conference in Boston

2009 Charity Dinner

The 2009 Charity Dinner at The Sebel Trinity Wharf in Tauranga was a great success. Read the report.

Conference Report

Read Kate Linterman's report on the 12th International Congress on Neuronal Ceroid Lipofuscinosis in Hamburg

2008 Annual Report

The 2008 Annual Report is now available for downloading (MS Word format).

Our new look

You will have noticed that we have a new design to our website, to match our new logo.