CEO Update on Orkambi, 27 April 2016
Our health system is ailing and placing Australians at risk. Cystic Fibrosis Australia is calling on the community to find their voice and shout out … “This is not acceptable”. Read the full Communique from CFA CEO Nettie Burke.
Orkambi advocacy supported by Sonia and Evie Marshall. For the full article
PBAC Announcement 22 April 2016
Sadly there are many disappointed Australians today as we digest the news that Orkambi, the latest new generation drug for cystic fibrosis, will not be recommended for reimbursement by the Pharmaceutical Benefits Advisory Committee (PBAC) for Australians with cystic fibrosis (CF). For more...
Cystic Fibrosis CEO, Nettie Burke appeared in an SBS Interview on Friday, Breakthrough cystic fibrosis drug rejected by Australian authorities.
TGA approves extended use for KALYDECO
The Therapeutic Goods Administration (TGA) has approved expanded use of KALYDECO for people with cystic fibrosis (CF) ages 6 and older with the R117H mutation.
The TGA approval is based on data from a Phase 3 randomised, double-blind study of 69 people with CF ages 6 and older who had the R117H mutation.
Vertex will now prepare a submission for the Pharmaceutical Benefits Scheme, to provide access to approximately 100 Australian patients with this mutation.
ORKAMBI approved by TGA
The last few days have been very positive for the cystic fibrosis community with respect to the drug Orkambi for people aged 12 years and older. Orkambi is the first medicine to treat the underlying cause of cystic fibrosis for people with two copies of the F508del gene mutation. For the lastest communique from CFA CEO, click here
CEO update on Orkambi, 29 January 2016
Canadians over the age of 12 with two copies of the F508del mutation are celebrating this week the approval of Orkambi byHealth Canada. Read the latest from CFA CEO Nettie Burke>
Welcome to the CF Federation, Australia
Cystic Fibrosis (CF) is the most common, genetically acquired, life-shortening chronic illness affecting young Australians today.
It primarily affects the lungs and the digestive system, however, it also affects a number of other organs and systems.
Complications increase with age, requiring ever increasing levels of (self) care and support.
On average one in 25 people carry the CF gene (most of whom are unaware they are carriers).
To find out more about CF click ABOUT CF on the toolbar above.
Cystic Fibrosis support services organisations exist in every major jurisdiction of Australia, with the exception of the Northern Territory.
People living with CF in the Northern Territory are often supported by one or more of the adjoining CF organisations.
To contact your nearest CF organisation click CONTACT US on the toolbar above.
Most CF organisations in Australia began as member peer-support and self-help groups, growing over time to member services associations.
Today nearly all of these are modern not-for-profit health support services and research organisations involved with every aspect of living with
Cystic Fibrosis in their jurisdictions, including providing support services, raising public awareness, promoting carrier screening,
supporting research and lobbying for better health and wellbeing outcomes for those living with CF.
To find out more select the relevant entity on the map of Australia at top right of screen.
In 2003 Cystic Fibrosis Australia was incorporated as a company limited by guarantee with a number of the larger CF organisations as founding members and guarantors. Cystic Fibrosis Australia is focussed on national sponsorship, advocacy and awareness raising and on the promotion and funding of research.
All State and Territory CF organisations together with Cystic Fibrosis Australia work together collaboratively in a loosely coupled network to ensure better standards of care and quality of life for all Australians living with Cystic Fibrosis.
Funding for research into Cystic Fibrosis in Australia is through two principal foundations: the Australian Cystic Fibrosis Research Trust (ACFRT) and Cystic Fibrosis Research Limited. To learn more about CF research select RESEARCH on the toolbar above.