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Working towards 'Lives unaffected by cystic fibrosis'


Kalydeco Update - September 28, 2016

On 5th November 2016, the PBAC will meet to decide whether KALYDECO is approved for reimbursement for 2-5 year old children in Australia.

This label extension will greatly benefit 30 little Australians. The KALYDECO KIWI study resulted in a drop in sweat chloride and most importantly, little lungs were kept healthier for longer.

CFA is asking the cystic fibrosis community to support the approval of KALYDECO for 2-5 year olds by going to the PBAC website and completing a consumer comment. Comments will not be accepted after 5pm (AEST) on 5 October 2016.

The key points that need to be made are:

1. There is nothing like Kalydeco… it is a drug that treats the disease, not the symptoms

2. Kalydeco slows down lung damage resulting in better health outcomes across a child’s life

3. Overseas studies show 50 mmol/litre reduction in sweat chloride

4. Every day of delay, young lungs are experiencing irreparable damage

5. 200 Australians over the age of 6 years are currently are benefitting from KALYDECO. Let’s expand it by 30 people and support little Australians between the ages of 2-5 years.

Please call CFA on 02 98895171, if you have any questions. If you would like to create a My Story video, please send it to cfa1@cfa.org.au. All My Story videos will be used to make our case with the PBAC. You can view some of the wonderful creative films 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...


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 - September Edition

Our September e-newsletter is out now! Read about the latest news and events including snapshot of support services, calendar of events this month and more...

Click here to read CFV Noticeboard September Edition


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