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.
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.
We have collected some medical papers that may be of interest to families.
Links to some of the very latest research taking place for lysosomal diseases.
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.