CEO Update, Kalydeco & the PBAC, 28 Sept 2016
On 5th November 2016, the PBAC will meet to decide whether KALYDECO is approved for reimbursement for 2-5 year old children in Australia. This label extension will greatly benefit 30 little Australians. For more...
CEO Update, Orkambi & the PBAC, 5 September 2016
There are 1,000+ Australians who would benefit from Orkambi being approved for reimbursement at the PBAC meeting in November. You can help those in the CF community who really need it and register your support for the listing of Orkambi by simply clicking this link. For the full CEO Communique, click here
CEO Update, "My Story", 25 August 2017
CFA plans to create a gallery of great “My Story” videos and compelling arguments for our politicians to use when lobbying for greater health resources. We want the CF community to share what it is like to live with CF and why greater support is needed and warranted. For more...
CEO Update, Cystic Fibrosis Conference 2017, 17 August 2016
In 12 months time – from August 5th to the 8th, 2017 - the 12th Australasian Cystic Fibrosis Conference (ACFC) will be held in Melbourne.
The conference is Australasia's largest event dedicated to cystic fibrosis (CF) and will bring together around 200 lay people and over 350 medical, allied health and nursing delegates plus CF researchers from across the region and around the world.
CEO Update, The Kaleidoscope Project, 11 August 2016
Now is your chance to have your say … The Kaleidoscope Project is a national initiative designed to bring together children with chronic disease, their families, clinicians and policy makers to identify important research topics and priorities. For more...
CEO Update on Kalydeco, 6th July 2016.
The TGA is reviewing Vertex's submission on using Kalydeco for the treatment of patients aged 2-5 years with cystic fibrosis with a G551D or other gating mutation. For the full Communique from CEO Nettie Burke, click here.
There is a very informative article by the KIWI Study Group on CFA’s website that will provide you with evidence of Kalydeco’s safety and efficacy. Click here for full article.
Vertex Kalydeco and Orkambi update
Vertex announces Presentations of Data for KALYDECO(R) (ivacaftor) and ORKAMBI(R) (lumacaftor/ivacaftor) at European Cystic Fibrosis Society (ECFS) Conference. For more
CEO Update on Orkambi, 6th June 2016
Now is the Winter of our Discontent … but is our dissatisfaction about to end?
We are now in the Australian Winter and more than a month after the devastating decision by the PBAC not to reimburse Orkambi, the cystic fibrosis community remains outside the ‘stakeholder consultations’ about the funding of costly new generation drugs.
The consumer voice should be acknowledged and Cystic Fibrosis Australia needs the CF community to mobilise. Click here for more information on how you can help.
To download the social media assets, click here.
CEO Update on Orkambi, 23 May 2016
A month ago today we were devastated with the news that the PBAC rejected Vertex’s proposal for the reimbursement of the cost of Orkambi. We have had great support from the community, our clinicians, CF CAN and the media. It's time to contact the Politicians. For more.
Carrier Screening Education Campaign
Almost all children born with cystic fibrosis are born into families where there is no known family history. Cystic Fibrosis Victoria has launched a Community Education Campaign on Carrier Screening to help create awareness of CF and the availability of Carrier Screening. For more information, click here.
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.