Everyone at Cystic Fibrosis Australia (CFA) is committed to improving clinical practice and patient outcomes with the aim of extending life expectancy from 47 to 55 years by 2026.
It is an imposing challenge. Every four days a baby is born in Australia with cystic fibrosis (CF) and more than one million Australians are carriers of CF genes. CFA is working to transform lives and reduce the burden of the disease.
CFA believes that all people with CF should have the opportunity to lead full, productive and valuable lives with access to the best treatments and high quality clinical care.
CFA supports the broad CF community through Advocacy, Research and Clinical Improvement funding. CFA is committed to improving clinical practice and patient outcomes and experiences.
CFA has established a consistent approach to advocacy across Australia and is now a subject matter expert for government, industry and the media. We also support state and territory CF bodies who provide valuable services to the CF community.
Systemic advocacy and promoting the rights of people with CF is key and since 2016 CFA has established a number of programmes to do this. They include CF CAN (Consumer Advocacy Network), a clinical trials information portal and a drug development pipeline portal, Consumer Connect an online forum for the CF Community and the Governor General’s Patrons Awards.
As CF drug and treatment development continues at a rapid pace CFA is committed to establishing equitable funding and access for all people with CF. CFA proactively offers innovative solutions to the Federal Government and relevant health bodies to ensure CF remains at the top of the health agenda.
We work tirelessly to raise the profile of CF nationally and takes key messages to government, business and the health and community sectors to ensure these groups understand and appreciate the challenges people with CF face. These include key issues such as drug affordability and availability, mental health, infection control, gene testing and access to the best medical and allied health services.
CFA is responsible for creating innovative and enduring funding streams, cost and service effective business practices and a positive culture of support, respect and recognition. We maintain our quest for funding to ensure our research and clinical improvement assets such as the Data Registry, Peer Reviews, Centre Directors Forum, Standards of Care and our biennial Conference continue to thrive.
We consistently and proactively encourage collaboration to ensure the best gains are achieved in the fasted time, knowledge is shared, breakthroughs are celebrated and funds are not wasted through duplication.
CFA works closely with government entities, health service providers, research groups, NFPs in the health and chronic disease sectors and overseas colleagues and foundations. Collaboration allows us to be smarter with our research, services and clinical improvement programs but most importantly it delivers better outcomes more quickly for people with cystic fibrosis.
We are passionate about research and over the past 20 years we have funded more than 300 research and scientific projects valued at over $6 million. The Australian Cystic Fibrosis Research Trust (ACFRT) operates within the CFA organisational structure and works to attract and keep the smartest young Australian researchers in the CF field.
We have a long and impressive history stemming from the formation of the Australian Cystic Fibrosis Association in March 1971 by the Queensland and NSW Associations with the objective of conducting International liaison, nurturing new state organisations and providing a central body that would promote CF at a Federal level. It was an important first step on a quest to alleviate the suffering of children afflicted with CF and search for better ways to cope with what was then a largely uncharted disease.
In 1983 the six state and territory organisations formed a national body called Australian Cystic Fibrosis Associations Federation Incorporated. In 1998 it was renamed Cystic Fibrosis Australia Incorporated (CFA). CFA was established to facilitate and promote the provision of optimal care to all people affected by cystic fibrosis and ensure they have the best possible quality of life. At the end of April 2003, CFA became a company Limited by Guarantee.
Today CFA, as the national organisation, assists the state and territory member organisations achieve common objectives in Advocacy, Funding, Collaboration, Research and Clinical Improvement.
CFA receives no government funding so community support and corporate sponsorships are vital as they enable us to continue our work for people with CF and their support networks. 40 plus years on, from small first steps we have made enormous strides but the journey and its challenges continue.