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Welcome to Cystic Fibrosis Tasmania

Cystic Fibrosis Tasmania (CFT) works to promote research, increase awareness of cystic fibrosis and provide education, support and advocacy for our members and the wider community.

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Call for Abstracts for the 2017 Australasian Cystic Fibrosis Conference  - COMMUNIQUE 58 - 21ST FEBRUARY 2017

 

In August this year the 12th Australasian Cystic Fibrosis Conference will be held in Melbourne.

 

Cystic Fibrosis Australia and the Conference Medical Committee are now calling for Abstracts. The deadline for the receipt of Abstracts is Thursday 30th March 2017.

 

To submit your abstract, simply fill, complete and return the attached Abstract Submission form, or download the form here>

 

Please share this with your relevant networks as appropriate.

 

Yours sincerely

 

Nettie Burke

CEO

TO THE CF COMMUNITY - COMMUNIQUE 57 - 20TH FEBRUARY 2017

 

 The Board of Cystic Fibrosis Australia (CFA) has been advised of the possible merger of Cystic Fibrosis Victoria (CFV) and Cystic Fibrosis NSW (CFNSW).

 

CFA supports actions that lead to greater efficiency, coordination, consistency and benefits in service to people whose lives are affected by cystic fibrosis.

 

CFA will continue to provide national leadership with input from the collective of State and Territory CF organisations.

 

CFV and CFNSW have confirmed that the proposed merged entity will undertake the same roles as the two separate entities but with increasing efficiency. 

 

The relationship between CFA and the merged entity will remain the same as it has been with CFNSW and CFV.

 

Kind regards

 

Nettie Burke

 

 

 

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.

 

UPDATE ON ORKAMBI, MARCH 2016

Orkambi update

 

 

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 the latest from CFA CEO Nettie Burke

CEO UPDATE ON ORKAMBI, 3RD JANUARY 2016

Welcome to 2016 and welcome to Cystic Fibrosis Australia’s first advocacy push for the New Year. Read the latest from CFA CEO Nettie Burke>

 

 

    CEO UPDATE ON ORKAMBI, 3RD 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.

     

    ORKAMBI UPDATE, 21ST NOVEMBER 2015

    Overnight Orkambi, the drug combination of lumacaftor and ivacaftor received EU approval for people with CF 12+ with two copies of the F508del mutation. 

    The reimbursement process will now begin country by country. Great news for Europeans with CF and let's hope we get the same good news here in Australia in early 2016.

     

     

     

    SPILL - www.spill.org.au

    Spill Card

    To demystify and improve understanding about sexual and reproductive health for adolescents with cystic fibrosis (CF), a new online tool has been developed by Cystic Fibrosis Victoria, the Royal Children’s Hospital and Monash Medical Centre and a range of experts in CF, sexual health and digital communications. SPILL has relevant, targeted and age appropriate information in both text and video formats, for adolescents with CF who are just learning about their sexual and reproductive health.

    For more information: www.cysticfibrosis.org.au/all/spill
    Visit the site: www.spill.org.au