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

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.

Read about 2013 Rare Disease Day

Medical Papers

We have collected some medical papers that may be of interest to families.

View the list of papers

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.

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.