About CFA
CFA is a national body comprising member State CF Associations. The national office is located in North Ryde New South Wales.
The national organisation assists the member organisations to achieve common objectives by developing national education programs and collecting and distributing information about Cystic Fibrosis (CF) at national and international levels. This allows member organisations to efficiently and effectively direct their activities to the provision of high quality health and welfare services to children and young adults with CF and their families.
A major task of the national office is to secure the funds and professional expertise necessary to conduct research projects throughout Australia into CF, its cause and eventual cure. The research program is conducted through the Australian Cystic Fibrosis Research Trust (ACFRT), which operates within the CFA corporate structure.
CFA also administers and seeks funding for the National Cystic Fibrosis Data Registry. Established in 1996 the registry is a complete and thorough record of all people in Australia who have CF. To maintain privacy, each person with CF is coded. The registry is updated annually and has proved to be an invaluable aid to researchers seeking specific data for research projects and clinical trials. From 2006 all data collected will be via a web base system.
CFA organizers a National CF Conference every 2 years for Health Professionals and Lay People. This is held in Capital Cities - in 2011 it will be Melbourne.
MISSION
To be the peak national body supporting our members with their goals to enhance teh quality of life for people affected by Cystic Fibrosis (CF).
VISION
Lives Unaffected by Cystic Fibrosis.
OBJECTIVES
- Cystic Fibrosis Australia (CFA) will be a strong leader for CF organisations in Australia. "One voice for Cystic Fibrosis."
- CFA will advocate on behalf of those affected by CF. Advocacy will include but not be limited to developing national policy using the existing framework, forming national alliances, reaffirming and strengthening relationships with targeted Government departments, developing new and fostering existing relationships with relevant politicains, and establishing a policy development unit.
- CFA will develop a roadmap for Cystic Fibrosis research in Australia in conjunction with the Australian Cystic Fibrosis Research Trust (ACFRT).
