Patient Registry

Do you have a leukodystrophy or white matter disorder and would like to join the patient registry?

The Australian Leukodystrophy and White Matter Disorders Registry is a confidential research database of information about people with leukodystrophies and white matter disorders in Australia. Registries are absolutely essential for rare diseases to facilitate better understanding of natural history, collaboration of gene discovery, development of novel treatments and the establishment of clinical trials for patients.

Participants will have the opportunity to contribute to patient surveys, access educational resources and be informed of the latest leukodystrophy research.

If you would like to join, click the sign up button below.

What does participation involve?