Haemochromatosis Australia
Haemochromatosis Australia is a non-profit registered charity run entirely by volunteers.
We are the support and advocacy group for people affected by haemochromatosis, their families and loved ones. We aim to provide support for people with the disorder and to increase awareness of haemochromatosis in the general public and the medical and health professions. We have been operating for over 20 years and continue to grow and expand our activities.
We have been endorsed as a Deductible Gift Recipient by the Australian Taxation Office. Gifts of $2 or more are tax deductible in Australia.
Our Vision
No Australian will experience the symptoms of haemochromatosis.
Our Mission
As the primary advocacy group for Australians affected by haemochromatosis we will provide support and promote awareness, early diagnosis and research.
Our Values
We believe that people with haemochromatosis are entitled to
- The same quality of life and life expectancy as other Australians
- Diagnosis before symptoms occur
- Well informed health and medical services
- Easy access to the knowledge, support and services they need.
Our Objectives
1. Support people with haemochromatosis
We will provide support and up to date information to people with haemochromatosis and their families to assist them to manage their condition. We will provide opportunities to meet other individuals and families experiencing haemochromatosis.
2. Professional awareness
We will raise awareness in medical health professionals in order to improve the rate of early diagnosis and treatment.
3. Research
We will support, encourage and maintain a high interest in research that will contribute towards our vision.
4. Community Awareness
We will promote awareness in the community about haemochromatosis.
5. Society administration and governance
We will operate efficiently and with high ethical standards while growing our membership and influence.
Strategic Plan 2010 – 2015
The management committee has developed a strategic plan to help guide the activities of Haemochromatosis Australia over the next five years. You can view a copy here.
Our Rules
You can download a copy of the rules of Haemochromatosis Australia here.
Joining Haemochromatosis Australia
By joining Haemochromatosis Australia you will join others with haemochromatosis helping us carry on our vital work.
We will send you our Members’ Information Kit with a copy of our book ‘A Practical guide to Haemochromatosis’, a Venesection Record Book and other information resources. We will send you our quarterly newsletter with helpful information and news about our members and activities. Knowledge is vital to managing your condition. It helps you understand the disorder and empowers you to talk with your doctor.
Discovering you or a loved one has a strange and potentially dangerous genetic disorder can be confronting – even frightening. It is OK to feel some anger, pain, even grief. We are there to provide support and advice.
Where possible we will organise local meetings and information sessions where you can meet others in the same position and share experiences and support.
Joining Haemochromatosis Australia costs $30 per year ($20 for concession card holders). Our group relies on membership subscriptions and donations to maintain our services and work towards our Vision.
You can join Haemochromatosis Australia or make a gift to help us carry out our work on the Join or donate page of this website.
Our Management Committee
Margaret Rankin AM RN GradDipHthSc, Patron
Marg was appointed Patron in 2010. She was our founding president and retained that office for over 20 years until she stepped down in 2010. Marg is an active member of the current management committee. She is highly respected in haemochromatosis matters in Australia and overseas. Her contribution to haemochromatosis support was recognised with a Member of the Order of Australia (AM) medal in 2005. Marg also has extensive volunteering history with other not for profit groups, especially the RSPCA. Marg lives in Brisbane, Queensland.
Ben Marris BA (Social Work) OAM, President
Ben has served on the management committee for several years and was appointed president in 2010. Ben is a retired senior Tasmanian State public servant with extensive history of volunteering and management of not for profit groups. Ben lives in Kettering, Tasmania.
Desma Wieringa, RN RM, Bachelor of Nursing, Vice-President
Desma has served on the management committee for several years. Desma has previous experience in managing and providing support in a Women’s Midlife Information Service in Tasmania for a period of four years. Desma is a qualified nurse / midwife and currently works in nurse training and development in South Australia. Desma lives in Mt Barker, South Australia.
Tony Moorhead, Secretary
Tony was appointed Secretary in 2010. He is a retired federal public servant with extensive experience in project management, marketing and education, business analysis and organisation development. Tony is also Project Manager for the launch of Haemochromatosis Week 2012. He lives in Currimundi, Queensland.
Brian Smith, Treasurer
Brian has been treasurer of Haemochromatosis Australia for twelve years. He is a retired senior industry manager with an extensive background in financial management Brian lives in Brisbane, Queensland.
Karin Calford, Committee member
Karin has lived in Victoria, Queensland, ACT and NSW. She has been employed as a Payroll and Administrative Officer in a number of tertiary institutions across these states, and with the Therapeutic Goods Administration in Canberra, before moving to Newcastle. Karin is currently completing a Bachelor of Social Science. She is currently a volunteer at the Mater Hospital Cancer Council Information Centre in Newcastle. Karin joined the Haemochromatosis Australia management committee in 2010, acting as the NSW coordinator.
James Stephenson FRAIA, Committee member
James is a practicing architect and has been a committee member since 2010. Previously he has participated in Royal Australian Institute of Architect and local parish committees. He lives in Brisbane, Queensland.
Linda Rule, Committee member
Linda is the membership coordinator for Haemochromatosis Australia. She worked for 20 years as a school administrator and is currently a property manager, along with her husband, of 46 townhouses in Nambour, Queensland. Linda was diagnosed with Haemochromatosis in 1988 after her brother was found to have the condition.
GP Liaison Officer
Dr Katie Goot is the newest member of our Haemochromatosis Australia team. In her voluntary position she assists Haemochromatosis Australia to work with the medical profession and its representative bodies. Katie lives in Thangool, Queensland.
Medical Advisors
We have a panel of eminent researchers in the field of haemochromatosis to provide guidance and advice.
Professor Lawrie Powell AC Director, Royal Brisbane Women's Hospital Centre for the Advancement of Medical Research, Brisbane, QLD
Professor John Olynyk, Director of Gastroenterology,
Fremantle Hospital, Fremantle WA
Professor Martin Delatycki, Director of Clinical Genetics, Austin Health,
Director, Bruce Lefroy Centre for Genetic Health Research, Melbourne VIC
Professor Katie Allen, Group Leader, Gut and Liver Research Group,
Murdoch Childrens Research Institute, Melbourne VIC
Professor Darrell Crawford, Head, Discipline of Medicine
University of Queensland, Brisbane QLD
Contact Us
Visit the Contact Us page.