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Lysosomal Diseases New ZealandLysosomal Diseases NZ

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  • Lysosomal Diseases
  • About LDNZ
  • Family Stories
  • Resources
  • Resources
  • Annual reports
  • Newsletters
  • Access to medicines campaign
  • Rare Disease Day
  • Conference reports
  • LDNZ charity dinners

Resources

Annual reports and newsletters

LDNZ produces a report on its activities every year. We have produced a newsletter in the past, though these days we tend to update our members directly by email or through our Facebook page.

Annual Reports

  • Performance Report to June 2018 (pdf)
  • read more

Newsletters

  • August 2018 newsletter (pdf)
  • July 2018 newsletter (pdf)
  • June 2018 newsletter (pdf)
  • read more

Access to medicines campaign

We have been campaigning for over 10 years to get access to specialised enzyme replacement therapies for our diseases. Below is a list of the most recent updates to this campaign.

  • A summary of recent developments – 3 August 2018
  • Meeting the Minister of Health Today – 3 April 2018
  • The Health minister to the rescue? – 21 February 2018
  • read more

Rare Disease Day

Rare Disease Day is an international day for celebrating rare disease and raising funds for support groups.

Read about Rare Disease Day 2013

Conference reports

We encourage our members to attend conferences and ask that they write reports.

  • The trustees report on our highly successful 2nd Asia-Pacific Lysosomal Diseases Conference (PDF) held in Auckland, February 2019.
  • Sharon Noble, Lynda Dougan and Ra Timms – 5th Batten Conference 2010 Australia, Seaworld Nara Resort, Queensland, October 2010
  • Kate Linterman – 12th International Congress on Neuronal Ceroid Lipofuscinosis, Hamburg, June 2009
  • read more

LDNZ charity dinners

Over the years, LDNZ has organised charity fundraising dinners. Below you can read our accounts of these occassions.

  • Charity Dinner 2009
  • Charity Dinner 2008
  • Charity Dinner 2007

Resources

  • Resources
  • Annual reports
  • Newsletters
  • Access to medicines campaign
  • Rare Disease Day
  • Conference reports
  • LDNZ charity dinners

News

2nd Asia-Pacific Lysosomal Diseases Conference

The trustees report on our highly successful 2nd Asia-Pacific Lysosomal Diseases Conference (PDF) held in Auckland, February 2019.

Performance report to June 2018

The LDNZ Audited Performance Report for 2018 can be found here.

Rare Disease Epidemiology – 2nd Edition

In mid-2017, John was invited to write a preface for a book called Rare Diseases Epidemiology, which concentrates on the work done for LDNZ and ISMRD and talks about what patient advocates can achieve.

Here’s the link to the PDF or you can pay for and download the book here.

Read more...

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