Working towards a vision of no Australian harmed by haemochromatosis

  • My Iron Manager app on phone
Haemochromatosis Australia
Dianne Prince, President

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. Often the greatest need for someone with the condition is information and support during very early stages immediately after diagnosis. One or two phone calls with volunteers who understand their situation and who can point to our many resources is enough to relieve the person’s fears and enable them to get on with managing their treatment.

Treatment for haemochromatosis is to have blood removed. While many people are able to do this at an Australian Red Cross Blood Donor Centre, this is not always the case for people in rural and remote areas and it is sometimes difficult to find a clinic which does venesections.  Many of the calls to our InfoLine have been from health practitioners and people with haemochromatosis, looking for somewhere to get their venesection done. To make this easier Haemochromatosis Australia recently developed an app. The app called ‘My Iron Manager’ enables people to record their appointments for blood tests and blood donations, to track their progress and to find a location to have their venesection. This is good for people living and travelling in remote, rural and regional areas.

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.

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