Welcome to the website of Cystic Fibrosis Community Care - Victoria

Working towards 'Lives unaffected by cystic fibrosis'



- 18 AUGUST 2017

Rest assured that we are as equally devastated by today’s PBAC announcement on Orkambi as you are.

Yet again, our cystic fibrosis (CF) community has been let down by the Australian health system. For the third time the Pharmaceutical Benefits Advisory Committee (PBAC) has rejected Vertex’s submission for reimbursement for the CF drug Orkambi.

People with CF in Ireland, the United States of America, France, Germany, Greece and Italy have access to Orkambi. There are 1,000+ Australians with cystic fibrosis waiting for Orkambi and every day they are denied access to this drug is another day of potential life limiting lung damage.

Read the official media release from Cystic Fibrosis Australia on the Orkambi annoucement here.


13 JULY 2017

We are CFCC

Happy birthday to us! Cystic Fibrosis Community Care (CFCC) has officially incorporated the old CFV and CFNSW.

We care for half the total number of people living with CF in Australia under CFCC.

The name of our new organisation reflects what we want to achieve – that is, care for our community. We welcome the opportunity to do that better than we ever have before.


MERGER UPDATE - Looking for Cystic Fibrosis Community Care - NSW?

14 June: Cystic Fibrosis Community Care (CFCC) incorporates Cystic Fibrosis Victoria (CFV) and Cystic Fibrosis New South Wales (CFNSW). We ask for your patience while we transition to one combined website.

In the interim you can find information for Victorian activities on this page and either click


for information on NSW or visit their page through NSW button in the map of Australia above.

6 April 2017: The Members of Cystic Fibrosis NSW and Cystic Fibrosis Victoria have voted in overwhelming favour of amalgamating. Our new organisation will be known as Cystic Fibrosis Community Care – or CFCC.

CFCC will benefit the community in many ways through the reduction of duplication and financial overheads, whilst also increasing administrative efficiency and coordination. More money will be available for the provision of services and research.

This vote is a key step in a long process. Full implementation will take many months, possibly a year. Rest assured, the NSW and VIC communities will continue to be consulted as we merge into CFCC and become a stronger organisation.

If you have any concerns or questions in relation to CFCC, please don't hesitate to email CFV CEO Karin Knoester or call (03) 9686 1811.


Do you attend the CF Clinic or the Transplant Clinic at the Alfred?

We understand that the administrative functions and outpatient service, currently on 5 West will be moved to two separate and different locations off the 5th floor. The Alfred are asking for feedback in relation to these changes. Please ensure your voice is heard.

There are feedback forms through the link below. Or, a separate email will also ensure your opinions are taken into account…. Patientfeedback5floor@alfred.org.au

In order for CFV to advocate effectively on your behalf, we would appreciate a copy of your feedback to the Alfred. Please CC your correspondence to ceo@cfv.org.au. 

Download the Feedback Form here


Carrier Screening: Knowing Your Options

An estimated 1 in 25 Australians carry the gene changes that can cause CF. Most of whom are unaware...

WATCH NOW: Follow this link to watch the videos and learn more

Banner quote about carrier screening

Read more stories from members of the community...



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