HFA is governed by a Council of Delegates nominated by State/Territory Foundations in line with the Constitution. HFA Council meets annually for the purpose of establishing policy and setting the directions of the organisation. An Executive Board is elected by Council Delegates to oversight the operations. All Council members act in their roles in a voluntary capacity. The day to day operations of the Foundation are managed by a team of paid staff lead by the Executive Director and staff at a small rented office in Melbourne.
HFA operates as a not for profit organisation and its effectiveness is dependent upon the goodwill of many volunteers which includes people affected personally by bleeding disorders and representatives of governments, health sector and industry who may also contribute their skills, knowledge and time to achieve common goals.
HFA receives some Commonwealth government funding for secretariat activities and for some of the programs and activities undertaken to support the bleeding disorders community nationally. This government funding is negotiated and accounted for each year against agreed objectives. Most HFA operations however, are funded by donations from individuals, trusts and companies which choose to support the Foundation.
The first haemophilia society formed in Victoria in 1954 and was one of the first haemophilia patient support organisations in the world. Victoria was closely followed by New South Wales and later South Australia to represent people with haemophilia and their families in each of those States. In 1979, they joined together to form a federation of haemophilia societies and Haemophilia Foundation was established to represent the haemophilia community nationally and with one voice. Haemophilia Foundation was registered as an incorporated association in 1986.
An expansion program lead to the formation of societies and support groups in Queensland, Western Australia, Tasmania, Hunter Valley, Australian Capital Territory and Northern Territory . In 1993 these groups adopted the name Foundation and approved the common use of the national haemophilia logo.
Much of HFA’s early work was directed towards lobbying for improved treatment facilities, blood product supplies and counselling services. A great deal has been achieved.
In the mid 1980’s the incidence of HIV infection through the use of contaminated blood products led to initial government grants for the education and support of people with haemophilia infected with HIV, and their families. In the early 1990’s it was also known that hepatitis C had contaminated blood products and many people who used these products for their treatment had been infected and developed chronic hepatitis C.
HFA worked with member foundations to ensure treatment and support was available and over the years efforts were concentrated on ensuring access to adequate supplies of safer treatment products for all people with bleeding disorders around.
AUSTRALIAN CAPITAL TERRITORY Dr Richard G Pembrey, AM, MBBS, MD, FRACP, FRCPA
WESTERN AUSTRALIA His Excellency the Honourable Chris Dawson APM, Governor of Western Australia
NEW SOUTH WALES Dr Kevin A Rickard, AM, RFD
VICTORIA Dr Alison Street, AO
TASMANIA Lady Green
QUEENSLAND Her Excellency the Honourable Dr Jeannette Young AC PSM, Governor of Queensland