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
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.
Rare Disease Day
Rare Disease Day is an international day for celebrating rare disease and raising funds for support groups.
Medical Papers
We have collected some medical papers that may be of interest to families.
Research developments
Links to some of the very latest research taking place for lysosomal diseases.
Conference reports
We encourage our members to attend conferences and ask that they write reports.
- Sharon Noble, Lynda Dougan and Ra Timms – 5th Batten Conference 2010 Australia, Seaworld Nara Resort, Queensland, October 2010
- Joanne Labedzki – National Tay Sachs and Allied Diseases, Boston, April 2009
- 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.
John's journal
Between 1997 and 2004, John Forman kept a diary of his efforts to promote research and improve information and clinical care for lysosomal storage disorders and to develop LDNZ.