Haemochromatosis Australia

Haemochromatosis Australia is a non-profit registered charity dedicated to supporting Australians affected by haemochromatosis, the most common inherited iron overload disorder in the country. Operated entirely by volunteers, the organisation provides vital support and advocacy for individuals diagnosed with the condition, as well as their families and loved ones. With over 30 years of experience, it actively works to raise awareness about haemochromatosis among the general public and healthcare professionals to promote early diagnosis and effective treatment.

Mission and Vision

The mission of Haemochromatosis Australia is to serve as the primary advocacy group for Australians living with haemochromatosis by providing support, promoting awareness, encouraging early diagnosis, and fostering research. Its vision is clear and ambitious: no Australian will suffer harm from haemochromatosis. The organisation upholds values that ensure people with haemochromatosis receive the same quality of life and life expectancy as others, with timely diagnosis and access to well-informed medical services and support.

Main Objectives

• Support people with haemochromatosis by offering up-to-date information and opportunities to connect with others facing similar challenges.
• Promote community awareness to increase understanding of the disorder among the public.
• Raise professional awareness within medical and health professions to improve early detection and treatment rates.
• Advocate for health policy improvements related to haemochromatosis care and management.
• Encourage and support research that advances knowledge and treatment of haemochromatosis.
• Maintain high standards of governance and administration to ensure efficient operation and growth.

Benefiting Groups

The primary beneficiaries of Haemochromatosis Australia’s work are people diagnosed with haemochromatosis, their families, and loved ones. The organisation also supports health professionals by providing educational resources to improve diagnosis and treatment. Through its outreach, the wider community benefits from increased awareness and understanding of this genetic disorder.

Services and Activities

• Support services including a volunteer-run InfoLine offering personalised information and guidance.
• Educational resources such as brochures, fact sheets, videos, and podcasts for patients and health professionals.
• Community events like World Haemochromatosis Week and the annual OVERLOAD art exhibition to raise awareness.
• Online and local support meetings providing opportunities for connection and shared experiences.
• Advocacy efforts to influence health policy and promote best practice management of haemochromatosis.
• Promotion of research collaborations and support for studies advancing understanding of the disorder.

Haemochromatosis Australia invites the community to get involved through membership and donations to sustain and expand its vital work.