Collaboration

Cystic Fibrosis Australia (CFA) works closely with government entities, health service providers, research groups, not-for-profit’s (NFP) in the health and chronic disease sectors, and overseas colleagues and foundations. Collaboration allows us to be smarter with our research, services, and clinical improvement programs but most importantly it delivers better outcomes more quickly for people with cystic fibrosis (CF).

We consistently and proactively encourage collaboration to ensure the best gains are achieved in the fastest time, knowledge is shared, breakthroughs are celebrated and funds are not wasted through duplication.

The Lung Health Alliance

CFA is an official member of The Lung Health Alliance.

 

The Lung Health Alliance is a collective of national respiratory NFP organisations working together to improve the lung health of individuals and communities in Australia.

 

The Lung Health Alliance also contributes to the global effort for lung health.

 

The following organisations are members of the Alliance:

      • Asthma Australia
      • Australian Respiratory Council
      • National Asthma Council Australia
      • The Australian Lung Foundation
      • The Thoracic Society of Australia and New Zealand (TSANZ).

Alliance activities are managed and monitored by the Lung Health Alliance Chief Executive Officers’ Group.

 

The Alliance work includes securing support for world class respiratory research, improving patient outcomes and advancing the diagnosis, treatment and search for a cure for respiratory diseases.

The Thoracic Society of Australia & New Zealand (TSANZ)

CFA works closely with TSANZ to increase understanding surrounding lung diseases, particularly CF. 

 

Collaboration between CFA & TSANZ is done with a joint commitment to prevent respiratory illness, improve clinical care and improve outcomes for people living with CF. 

You can download Perx from the App Store or Google Play store today by clicking here.
 

On sign-up, you may be asked for a Member Code – if so please enter “roses”.

Perx Health

Perx is an app that helps you simplify your daily health routine. Managing your medications and forming healthy habits can be tough but Perx helps by making it fun, easy, and rewarding to manage your medications and stick to your schedule. 

 

CFA is proud to offer Perx to help people self-manage their condition and the ability to earn REAL rewards for doing so.  It offers the ability to record your most important medical information, monitor progress against goals and keep track of all your appointments, prescription refills and history. It encourages those living with CF to feel empowered with their day-to-day management and improve their quality of life.

 

Perx is honored to work with CFA to provide support for day-to-day adherence and motivation to reduce disease burden and improve quality of life. We are proud to be able to offer the app completely FREE for people living with CF.

To find out more and to sign up for your free access: CLICK HERE 

 

Please contact the Perx team at support@perxhealth.com if you have any additional questions or issues during sign-up.

Beat CF

BEAT CF is a little different from most of the trials you’ve heard about or been involved in before. BEAT CF is a platform study. The study aims to optimize the management of CF exacerbations and will start by collecting routine health data. After this data collection phase, BEAT CF researchers will be able to set up multiple trials of different treatments, at the same time, to find out which treatments work best and which people they work best for. The study is enrolling children, teens, and adults with CF around Australia and is being coordinated at the University of Sydney.  BEAT CF is open to all people with CF unless you’ve had a lung transplant.    

 

This video explains more about BEAT CF.

 

Visit beatcf.org.au to learn more and register your interest to participate.

 

You can also follow the study on Twitter to stay up to date with trial news including announcements of new CF centres involved in the study.

finding strength in sound

Cystic Fibrosis Australia, together with the City of Melbourne Highland Pipe Band (Australia’s largest community pipe band), is proud to bring Pipes for the People to Australia. This inspiring program began in the United States with a young student named Keshav, whose love for bagpiping has grown into a global community for young people living with cystic fibrosis.


Keshav’s journey with bagpipes began at St Thomas Episcopal School in Houston. The school has a highly respected Scottish Arts program that teaches pipes, drums and Highland dancing. Surrounded by this environment, and encouraged by his sister who is a Highland dancer, Keshav discovered his passion early. He began learning the pipes at the age of eight and later travelled to Scotland to perform at the World Pipe Band Championships in Glasgow.

 

Even after leaving St Thomas, he continued playing with the Houston Highlanders to maintain his skills. Bagpiping is not widely practiced in the United States, yet for Keshav it held a sense of culture, discipline and joy that he did not want to let go of.

 

It was during middle school that he realised bagpiping could be more than a musical pursuit. After taking a break from regular practice, he developed a respiratory infection. His parents encouraged him to start playing again to see if it might help. As soon as he picked up the pipes, he began coughing, clearing his lungs and breathing with more ease. That moment sparked an idea that would later become Pipes for the People.

 

Launched in the summer of 2024, the program offers one on one sessions tailored to each student. Keshav teaches beginners using a chanter, a small and easy to clean practice instrument that is well suited for people with cystic fibrosis. The lessons help build lung capacity and also give young people the opportunity to gain confidence and learn a new skill.

 

Keshav also created an online community on Discord to give young people with cystic fibrosis a safe and supportive space to connect. Members join from different countries and share stories, encouragement and plenty of CF related jokes that often make Keshav smile once he understands them.

 

Through his creativity and determination, Keshav has shown how a personal passion can grow into something that supports others. With the help of Cystic Fibrosis Australia and the Melbourne City Pipe Band, Pipes for the People is now reaching more young people and offering connection, confidence and better breathing through music.


Disclaimer

Cystic Fibrosis Australia (CFA) is pleased to support the promotion of Pipes for the People in partnership with the Melbourne City Pipe Band. While this program has been beneficial for some young people living with CF, participation is entirely voluntary and undertaken at the individual’s own risk.

CFA does not oversee or deliver the program directly and cannot guarantee its suitability or safety for every participant. Parents and guardians are strongly encouraged to use discretion, seek medical advice where appropriate, and ensure that any participation is safe, supervised, and appropriate for their child’s health needs.

By choosing to sign up, families accept responsibility for their own decisions and for taking reasonable precautions to protect the wellbeing of their child.

Find out more about Pipes for the People: Click here

Genetic Testing for Rare Diseases

The survey is expected to take around 30 minutes to complete. 

Study Title: Gut Research Advancing A Mechanistic and Personalised Understanding of Symptoms in Cystic Fibrosis (GRAMPUS-CF)

Exploring gut symptom ‘clusters’ in cystic fibrosis

Many people with CF experience tummy symptoms that affect their daily life. Despite the availability of new CF modulator treatments such as Kaftrio/Trikafta, CF gut problems persist in many people.

 

Not every person with CF experiences the same combination of GI symptoms, so it’s likely there are different mechanisms that cause different combinations. This is what we aim to study.

If we can identify these different ‘clusters’ of symptoms and the mechanisms behind each one, we can develop better, more personalised treatments for people with cystic fibrosis.

 

What do I have to do?

We would like you to complete some a few short questionnaires on symptoms and food intake, on three occasions, six months apart.

Questionnaire details are outlined in more detail via our Participant Information sheet.

 

Who can get involved?

Adults and children (aged 6-15 years) with CF.

People with CF anywhere in the world can get involved.

Your participation will be helpful whether or not you have trouble with gut symptoms and whether or not you are taking one of the new CF modulator drugs.

Thank you for your support in driving individualised treatments for gut symptoms!

 

The Australian Cystic Fibrosis Data Registry (ACFDR) team at Monash University is conducting a study regarding pregnancy outcomes in women on Trikafta.

For more information or if you would like to be involved, please contact: 

rasa.ruseckaite@monash.edu

Or Call: 03 9903 0437

Pregnancy & Trikafta Study (Monash)

Sydney Children’s Hospital, Randwick is running a new research study: “Parental perspectives on dietary priorities, barriers and enablers in transitioning from the CF legacy diet."

For more information or if you would like to be involved, please contact: 

 Tamarah.Katz@health.nsw.gov.au 

Or Call: 02 9382 1195

Need More Information?

Scroll to Top