Dedicated to providing better outcomes for individuals with leukodystrophies

The Australian Leukodystrophy Clinical and Research Program aims to provide more diagnoses, improved experiences, and better outcomes for families affected by leukodystrophies and white matter disorders through research and targeted precision treatments. The program is a national collaboration of medical research institutes, hospitals and universities around Australia.

What is leukodystrophy? Our program

Genetics and genomics

Rapid diagnosis

Over one hundred new adult and paediatric patients present with leukodystrophies in Australia each year. However, until recently around half of patients with these debilitating conditions remained undiagnosed.

The Australian Leukodystrophy Clinical and Research Program is using state of the art genomic technologies to provide rapid testing and help reduce the proportion of undiagnosed leukodystrophies.

Our program

Research and treatments

Translating research to treatments

Although genomics is successfully identifying new rare diseases by unlocking their previously unknown causes, diagnosis is only the first step.

The Australian Leukodystrophy Clinical and Research Program works closely with clinicians, researchers, advocacy representatives, and industry leaders around the world to help establish translational pathways for the development of clinical treatments, promote new research and share scientific discoveries.

Research Collaborations

Join 
a study

The Australian Leukodystrophy Clinical and Research Program is involved in multiple research studies that are open to all individuals with a diagnosed or undiagnosed leukodystrophy or white matter disorder.

Research studies include our patient registry, natural history studies, and clinical trials for specific leukodystrophies.

Sign up

Visit an expert

The White Matter Disorders Clinic is based at the Royal Children’s Hospital in Melbourne, Australia and runs on a monthly basis. The clinic provides comprehensive assessment and diagnostic testing where needed for children with leukodystrophies and white matter disorders.

White Matter Disorders Clinic

Support and resources

Leukodystrophy Australia is the national peak organisation providing social work support. Go to this page to find support and resources on the different leukodystrophy types.

Support and resources