Consumer comments on Orkambi close shortly.

On 10 February 2016 the PBAC Consumer Comments portal closes. Please support our efforts and make comment … go to the PBS Website http://www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form

When completing the submission, note that the therapeutic drug you are commenting on is Orkambi and the date of the PBAC hearing is 8th March 2016.

Also, throw your support behind our on-line petition.  Click here to add your name and support people with cystic fibrosis.

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>

 

CEO update on Orkambi, 15 January 2016

In less than a month, the PBAC Consumer Comments portal will close! Now is the time to make your voice heard on the Orkambi debate. Read more from CEO, Nettie Burke.

CEO update on Orkambi, 2 January 2016

Welcome to 2016 and welcome to Cystic Fibrosis Australia's first advocacy push of 2016. Read more from CEO, Nettie Burke.

CEO update on Orkambi, 23 December 2015

Today the Agenda for the PBAC Meeting in March 2016 was released and Orkambi is on the list. Read more from CEO, Nettie Burke.

CEO update on Orkambi, 18 December 2015

Leading into Christmas, CFA would like your assistance with our 'Last minute Christmas wish'.  Click here for the next update from CEO, Nettie Burke

CEO Update on Orkambi, 3 December 2015

CFA is reaching out to the CF Community to "Use your Voice" and help share the message about Orkambi with Politicians and Media.  

Click here for the letter from CEO, Nettie Burke which includes details on how you can assist and where to find the contact details for the politicians which are available on the CFA website.

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.

 

 

National
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