Haemophilia Foundation Australia (HFA) stands for people having haemophilia; the von Willebrand disorder; as well as other associated inherited bleeding disorders, and patient’s families by:
- Representation & Advocacy
The Foundation is working with a State and Territory Foundations network to make sure all having bleeding disorders in Australia get access to the best practice care and treatment and care in the world.
Haemophilia Foundation Australia is a National Member organization belonging to the World Federation of Haemophilia, and takes part in activities to enhance care and treatment access to people having bleeding disorders across the world.
Haemophilia is a disorder associated with blood clotting when one of the necessary clotting factors becomes deficient. The most common form is Haemophilia A and is as a result of factor VIII deficiency. Haemophilia B is the result of factor IX deficiency.
Bleeding is largely internal. The clotting factor deficiency produces a broad assortment of bleeding episodes, typically into the muscles or joints. The episodes of bleeding, also known as bleeds, might happen spontaneously or due to injury or trauma. The bleeding has to be stopped through an infusion of the suitable clotting factor via intravenous injection. When the internal bleeding does not get quickly stopped using treatment, it leads to swelling and pain. Over time, the bleeding into the muscles and joints could cause damage of a permanent nature like chronic pain, arthritis, and severe joint damage needing surgery.
The Haemophilia Foundation Australia History
The initial haemophilia society was formed in in 1954 in Victoria and it became among the world’s first haemophilia patient support outfits. Closely following Victoria was New South Wales and then later South Australia representing people having haemophilia as well as their families in those respective States. In the year 1979, they came together to create a haemophilia societies federation and the Haemophilia Foundation was set up representing the haemophilia community countrywide and with a single voice. The Haemophilia Foundation got registered in 1986 as an incorporated association.
Programs of expansion lead to the establishment of support and societies groups in Tasmania, Hunter Valley, Queensland, Western Australia, Northern Territory and Australian Capital Territory. These groups in 1993 assumed the name Foundation and agreed on the common usage of the nationwide haemophilia logo. Most of the early work done by the HFA was directed into lobbying for better treatment facilities, counselling services and blood product supplies. Quite a great deal has since been attained.
Incidences of HIV infection in the mid 80s through the usage of blood products that were contaminated led to first government grants towards the support and education of persons having haemophilia and HIV infected plus their families. During the early 90’s it also became known that hepatitis C had led to blood products that were contaminated and lots of people who had used such products during their treatment had become infected and gone on to develop chronic hepatitis C.
Haemophilia Foundation Australia (HFA) then worked with other member foundations in ensuring support and treatment is ever available and efforts were put into place ensure access to sufficient supplies of treatment products that were safer for all having bleeding disorders.
The Work of Haemophilia Foundation Australia
The Council of Delegates, nominated by State/Territory Foundations in accordance with the Constitution governs the activities Haemophilia Foundation Australia. The HFA Council meets yearly to establish policy and set the organization directions. Council Delegate select an Executive Board that oversights operations. Day to day Foundations operations are run by a team of salaried staff guided by the Executive Director at a rented office located in Melbourne.
Haemophilia Foundation Australia runs as a not for profit organization. Its effectiveness is largely dependent on the goodwill of countless volunteers including people who are personally affected by the bleeding disorders, government, industry and health sector representatives who also contribute their knowledge, time and skills towards achieve the common goals.
The Foundation gets some funding from the Commonwealth government for secretariat activities as well as for several of the activities and programs being carried out in supporting the bleeding disorders community countrywide. However, most of the HFA operations are funded by donations coming from companies, trusts and individuals choosing to support the Foundation’s activities.
Haemophilia Foundation Australia Council
Under the Constitution, the Haemophilia Foundation Australia Council has been set up as the main governing committee. The Foundation Constitution provides that one Delegate be elected from every State and Territory Foundation towards forming the HFA Council. Each of the delegates acts in a totally voluntary capacity. The Council meets 3 times annually including the AGM which is regularly held each October. The Council elects the Officer Bearers of the Haemophilia Foundation Australia.
The HFA Supporters
Haemophilia Foundation Australia greatly values the Corporations, Trust and individuals who donate their funds towards supporting the objectives.
The bighearted support of groups and individuals in the community allows HFA to offer education, support and services people having haemophilia and several other bleeding disorders such that they could lead a fulfilling and active life.
There are lots of ways you could support:
Making a donation
Haemophilia Foundation Australia urgently needs donations to offer services and programs such as family camps, peer support groups, workshops, education and information resources plus research projects. Their most recent petition is seeking funding towards supporting people ageing with haemophilia and who are facing more complex health challenges.
Becoming a monthly donor
Through making a generous gift every month, you will be providing on-going and reliable funding for services needed throughout the entire life of a person living with some bleeding disorder – starting from the diagnosis, through to their childhood and youth; into adulthood and then ultimately into older age. Your donation every month provides the reliable funding that is needed to enhance life quality, at every stage of life for people suffering from a bleeding disorder.
Leaving a gift in your Will
When you take that step of including HFA in your Final Will, you’ll be ensuring that every person who is affected by any type of bleeding disorder gets cared for and represented now and into the future.
Selling Merchandise: Golf Balls
You could also take part is selling some merchandise such as golf balls that go towards the support of the Haemophilia Foundation Australia objectives