Welcome to the website of Cystic Fibrosis Victoria
Working towards 'Lives unaffected by cystic fibrosis'
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 email@example.com.
Download the Feedback Form here
The Campaign for #Kalydeco
As part of our ongoing campaign for the label extension of Kalydeco, we have sent a letter asking for support in our efforts to all Victorian members of the Commonwealth Parliament on 16 January 2017
Read the full letter here
AN OPEN LETTER TO THE CYSTIC FIBROSIS VICTORIA COMMUNITY FROM CEO KARIN KNOESTER
Rest assured that we are as equally devastated by last Friday’s PBAC announcement on Kalydeco and Orkambi, as you are. Right now it is important that we stand together as a community and push for these decisions to change.
So much evidence exists supporting the effectiveness of these medications and so many people are dependent on their provision. We need to know why PBAC made this judgement call. Read the letter here...
CFA update, CF Community head to Canberra, 19 Dec 2016
It is now time to launch Cystic Fibrosis Australia's (CFA) next advocacy event and I hope many of the community will be able to be part of it. CFA has planned a public 'protest' on the lawn at Parliament House on 7 February 2017. For all the details...
Carrier Screening: Knowing Your Options
An estimated 1 in 25 Australians carry the gene changes that can cause CF. Most of whom are unaware...
Cystic Fibrosis Conference 2017
The 12th Australasian Cystic Fibrosis Conference (ACFC) will be held in Melbourne from August 5th to the 8th, 2017. 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.
You can now learn more and register your interest here, to receive updates as they become available.
65 Roses Magazine - Winter Edition
With highlights from a successful 65 Roses Day in May 2016 and stories from our members and partners, 65 Roses Magazine is back! Take a look at the winter edition of 65 Roses Magazine
CFV Noticeboard - October Edition
Our October e-newsletter is out now! Read about the latest news and events including snapshot of support services, calendar of events this month and more...