Support vital research — join Australian Haemochromatosis Registry
22 May 2025
World Haemochromatosis Week is an opportunity to raise awareness of Australia’s most common genetic condition and support crucial research into iron overload and its impact on chronic disease.
As a health professional, you play a key role.
Encourage patients with a confirmed diagnosis of haemochromatosis to join the Australian Haemochromatosis Registry which is a national database helping researchers better understand this condition and its links to liver disease, arthritis, diabetes, and heart disease
Why the registry matters
Funded by the Australian Government Department of Health, Disability and Ageing, the registry collects de-identified health data to answer important clinical questions such as:
- why do some people remain asymptomatic?
- what influences disease progression and treatment compliance?
- how can outcomes be improved through earlier diagnosis and management?
Patient contributions to the registry will directly support efforts to improve future care and treatment guidelines.
Who can register?
Any individual with a confirmed diagnosis of haemochromatosis may register by providing:
- a positive HFE gene test
- and/or elevated transferrin saturation plus high serum ferritin or evidence of liver damage
How you can help
World Haemochromatosis Week is an ideal time to:
- discuss the registry with eligible patients
- encourage conversations about family risk and the importance of early testing
Resources from Haemochromatosis Australia
Haemochromatosis Australia is the national patient support organisation. It offers:
- educational brochures, fact sheets, videos and podcasts
- RACGP and ACRRM-accredited CPD modules for GPs
- a helpline (1300 019 028) available weekdays