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Cystic fibrosis organisations in Australia provide support and services to people with cystic fibrosis (CF) and their carers and families. They are committed to research and a quality improvement program focusing on improved clinical care for people with CF. Each state and territory (except Northern Territory) has a cystic fibrosis organisation devoted to providing a range of support services. These include counselling, information workshops and seminars, case management, comprehensive home care services and professional development for allied health personnel and financial support to take part in physical activities. They also provide information on cystic fibrosis for key milestones in a persons development such as, for newly diagnosed parents, for teenagers transitioning from a children’s hospital to an adult hospital and issues people face as an adult CF.
All state and territory cystic fibrosis organisations are members of Cystic Fibrosis Australia and work collaboratively together to increase awareness, provide essential services and support research and advocacy initiatives. In addition to encouraging cohesion among state and territory bodies, Cystic Fibrosis Australia manages the CF data registry, leads the national research program, conducts a biennial CF conference, and supports the quality improvement program including the clinic peer review program and the CF Standards of care and infection control guidelines.
Ph: (02) 9889 5171