Haemochromatosis is the most common genetic disorder affecting Australians. One in 200 people with northern European heritage have the genetic pre-disposition to absorb and store too much iron. One in seven are carriers. Our vision is to ensure no Australian is harmed by haemochromatosis. This can be achieved through early or timely diagnosis and access to treatment (venesection, blood removal or blood donation).
HA is a small volunteer organization, registered as a charity in Queensland. We don’t have a physical office, but operate in a completely online environment using Office 365’s Sharepoint to hold our documents in the Cloud. Our management committee meets monthly by teleconference and once a year face-to-face at our AGM. We have concentrated on using online and electronic channels to raise awareness among the public and to provide support to those diagnosed with the condition and information for healthcare practitioners. Our website provides simple, evidence-based information.
Our InfoLine – 1300 019 028 - is open five days a week. O
As a volunteer organization we are unable to support regular meetings or public information sessions, instead carefully selecting health conferences where we can promote our information and resources directly to health practitioners. This year we have had stands at the 15th National Rural Health Conference held in Hobart, APNA in Adelaide and Blood 2019 in Perth and e-satchel inserts at Rural Medicine Australia on the Gold Coast.
We work to build strong connections with other organisations, including the Australian Red Cross Blood Service, pathology providers, hospitals, medical practices and clinics. We have also worked closely with Primary Health Networks to get Haemochromatosis Health Pathways in place and to alert GPs to the evidenced-based information we provide on our website and via other channels. We are considering using Facebook forums for educating people with the condition on areas of particular interest.
Haemochromatosis Australia promotes connectedness between people with the condition via a moderated Facebook page, and between medical researchers, health practitioners and people with the condition via its bi-annual conferences and annual public information sessions. Connectivity across our systems enables us to operate effectively and efficiently while connectedness with patients, practitioners and partners ensures we keep on track to achieve our vision that no Australian is harmed by haemochromatosis.