This is complemented by a commitment to research and a quality improvement program focusing on improved clinical care for people with cystic fibrosis (CF).
Each State and Territory has a CF organisation devoted to providing a range of support services (CF QLD provides the support and services for those in the Northern Territory). These include counselling, information workshops and seminars, case management, comprehensive home care services and professional development for allied health personnel, financial support to take part in physical activities. This remit also includes information on cystic fibrosis for key milestones in a person’s development. This covers newly diagnosed parents, childhood development, teenagers transitioning from a children’s hospital to an adult hospital and issues people face as an adult CF.
Services vary across States and Territories depending on availability of funding, gaps in health care service provision, capacity and need. All State and Territory CF organisations are members of Cystic Fibrosis Australia (CFA) 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, CFA 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.
Families affected by CF and health professionals are encouraged to access services available from each of the CF organisations.