People in Australia with haemochromatosis are served by Haemochromatosis Australia.
Australia has a population of 25.6 million of whom 6 million were born in other countries. For 9 million both parents were born overseas. Approximately 90% of the population are of European ancestry with the majority of those having some English, Irish or Scottish ancestry. It is estimated that approximately 1 in 200 people of European ancestry in Australia are at genetic risk of haemochromatosis.
Haemochromatosis Australia is the support and advocacy group for people affected by haemochromatosis and their families.
Haemochromatosis Australia aims to:
- provide support for people with the disorder
- increase awareness of haemochromatosis in the general public and the medical and health professions
- foster research
- improve public health policy in relation to issues affecting people diagnosed or at risk of haemochromatosis.
Our vision is that no Australian will suffer harm from haemochromatosis.
The group is a non-profit registered charity run entirely by volunteers and with approximately 1,300 members. They have been operating for over 20 years and continue to grow and expand. Funding is almost entirely from member subscriptions and donations with occasional specific-purpose government grants.
The group is an incorporated association and is run by a volunteer management committee. They also have a number of Volunteer Advocates working in local communities across the country.
We offer a range of free support and information services and resources including:
Website – haemochromatosis.org.au
Telephone support – 1300 019 028
Facebook – www.facebook.com/haemochromatosis
Twitter – @HaemAus
YouTube – youtube.com/HaemochromatosisAust
Haemochromatosis: Your Questions Answered (28 page booklet in print and PDF format)
Information sheets on specific topics
Occasional public information sessions
A small number of local support or social groups
Members also receive:
A Practical Guide to Haemochromatosis (print booklet)
A quarterly newsletter Iron Age news (print and electronic)
Membership costs $40 per year or $25 concession
Our awareness raising activities continue throughout the year but are focussed on Haemochromatosis Awareness Week held in early August each year. Activities include:
Television and radio community service advertisements
Media articles and interviews
Poster campaigns and displays
OVERLOAD art exhibitions
Treatment in Australia
Most medical treatment in Australia is provided by private practice services but funded by the comprehensive national health insurance scheme known as ‘Medicare’
Tests for serum ferritin and transferrin situation, known as ‘iron studies’ and the genetic test of the HFE gene are normally ordered by a General Practitioner (GP) or specialist (haematologist or gastroenterologist). The tests are performed by private pathology companies.
People requiring venesection will require a referral from a GP or specialist.
Venesections are performed, upon referral by:
Australian Red Cross Blood Service (if the patient satisfies their normal blood donor eligibility criteria)
Private pathology companies
Some public and private hospitals
Some GPs at their clinics
People with haemochromatosis who visit Australia and require venesections will need to visit a local GP to obtain a referral. Contact Haemochromatosis Australia by the INFO LINE 1300 019 028 or firstname.lastname@example.org for further advice. It may be useful to bring with you a copy of your genetic test result and / or a letter from your doctor confirming your genetic status and the need for venesection.