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.
Cystic Fibrosis Australia (CFA)
CFA is a national not-for-profit organisation and the national body supporting people with Cystic Fibrosis. CFA comprises member State/Territory Cystic Fibrosis organisations. CFA's mission is to deliver research, advocacy and quality improvement outcomes supporting people with CF and be the peak national body supporting our State/Territory members with their goals to enhance the quality of life of people affected by CF.
We do this by:
- Collecting and distributing information about CF at a national and international level
- Building networks with acclaimed CF physicians, researchers and CF organisations in Australia
- Organising the biennial Australasian CF Conference
- Developing educational publications to support CF State organisations in their work
- Securing funds for the Australian Cystic Fibrosis Research Trust and assembling the professional expertise needed to administer CF research projects throughout Australia
- Developing a roadmap for CF research in Australia in conjunction with the Australian Cystic Fibrosis Research Trust (ACFRT)
- Sourcing funding support for, and administering the Australian Cystic Fibrosis Data Registry
- Assisting with developing national policy and advocating for change to bring benefits to people with cystic fibrosis and their families
Promote quality improvement in health care
- Facilitate the development and review of national guidelines for ‘Standards of Cystic Fibrosis Care’ and ‘Infection Control Guidelines’
- Resource and coordinate the ‘Peer Review of Cystic Fibrosis Clinics in Australia’
- Publish the Annual Australian Cystic Fibrosis Data Registry Report for use by clinics and researchers
- Organising national fundraising campaigns such as ‘65 Roses’ each May to raise awareness of CF and funds for research and education programs and more.
How you can help
Donations and sponsorships are vital to advance research into CF, conduct advocacy and to ensure improvement in health care services available to people living with CF. You can contribute to helping improve the quality of life of those who live with CF by donating today.