Cystic Fibrosis Queensland

Cystic Fibrosis Queensland To provide the education, support and services that empower people in the cystic fibrosis community

Happy Father’s Day! Wishing a very Happy Father’s Day to all the wonderful fathers, stepfathers, grandfathers, and fathe...
05/09/2026

Happy Father’s Day!

Wishing a very Happy Father’s Day to all the wonderful fathers, stepfathers, grandfathers, and father figures who make a difference in the lives of those around them.

Congratulations to Matilda B, winner of our Father’s Day raffle!Thank you to everyone who purchased tickets and supporte...
04/09/2026

Congratulations to Matilda B, winner of our Father’s Day raffle!

Thank you to everyone who purchased tickets and supported Cystic Fibrosis Queensland.

Last chance to purchase your Father’s Day raffle tickets!Treat Dad - or yourself - to a prize pack featuring:* A Merlo C...
03/09/2026

Last chance to purchase your Father’s Day raffle tickets!

Treat Dad - or yourself - to a prize pack featuring:

* A Merlo Coffee gift box
* Two pairs of socks
* A $50 Bunnings voucher

The raffle is drawn tomorrow, Friday 4 September. Get your tickets before it’s too late!

Purchase here: https://www.raffletix.com.au?ref=57n62

Prize collection from The Cystic Fibrosis Queensland Bookshop - Nundah

03/09/2026

Cystic Fibrosis ACT President and Cystic Fibrosis Queensland Board member, and CF mum, Shannon Malone-Brierley joined ABC Radio Canberra to share how advances in treatment are changing her son’s life, from playing rugby to planning a future in healthcare.

Shannon described a shift in the support families seek: fewer requests for help with hospital parking and more for gym memberships and sporting equipment. These are meaningful changes that reflect new opportunities to live well.

She also highlighted funding challenges facing Canberra’s CF clinic, while recognising the dedication of its clinical team.

The Australian Cystic Fibrosis Data Registry tracks our community’s changing demographics, treatments and complications. As people live longer, care must respond to an expanding adult population and complex needs, including CFRD, bone and liver conditions, mental health support, and ongoing treatment monitoring.

As Shannon reminded listeners, some people still cannot benefit from modulator therapies. Their needs must remain central to care and research. Progress is worth celebrating. It must be matched by investment in care for everyone living with CF.

Monash Australian Cystic Fibrosis Data Registry: https://www.monash.edu/medicine/sphpm/registries/acfdr

Standards of Care – Cystic Fibrosis Australia: https://shorturl.at/TouK

Meet Remy, one of the faces of HTA reform.Remy is two years old and loves riding bikes, dancing and helping to cook. He ...
02/09/2026

Meet Remy, one of the faces of HTA reform.

Remy is two years old and loves riding bikes, dancing and helping to cook. He even calls himself “Remy MasterChef”.

He also lives with cystic fibrosis. In his first year, Remy spent 12 weeks in hospital and was admitted to intensive care twice. Although he can now access a CFTR modulator, he could not access this treatment during that critical first year because of his age.

Cystic Fibrosis Queensland has collaborated with Patient Voice Initiative (PVI) to share Remy’s story and highlight why timely access to treatments matters.

Health Technology Assessment (HTA) helps inform decisions about which medicines and health technologies receive government funding. Reform is an opportunity to better recognise the experiences of patients and families and support faster, fairer access to treatments.

Evidence matters too. The Australian Cystic Fibrosis Data Registry collects information about treatment, care and health outcomes, helping guide research and advocacy. Alongside stories like Remy’s, this data helps us explain what our community needs and why access to effective treatment matters. Learn more about the registry: https://www.cysticfibrosis.org.au/cf-data-registry/

Thank you to Remy and his family for sharing their experiences. Their story is a reminder that behind every healthcare decision is a person, a family and a future.

Read Remy’s story in the flyer: https://acrobat.adobe.com/id/urn:aaid:sc:AP:95403937-ffed-4925-891a-0566724cb9d9 and learn more about PVI’s work to strengthen the patient voice: https://www.patientvoiceinitiative.org/about-pvi/

Millie is a member of the ACT cystic fibrosis community with big dreams for her future. But like many Australians living...
02/09/2026

Millie is a member of the ACT cystic fibrosis community with big dreams for her future. But like many Australians living with a chronic or rare condition, she and her family know the exhausting reality of waiting for life-changing medicines to become affordable and accessible through the Pharmaceutical Benefits Scheme (PBS).

Australians wait an average of 466 days for medicines to become available on the PBS. For Millie’s family, delays and age restrictions meant years of waiting while doing everything possible to protect her health.

Today, 11-year-old Millie takes between 40 and 60 tablets each day to manage her cystic fibrosis, but she continues to dream of becoming an astronaut, an Olympic runner or a football player.

As Millie’s mum, Sally-Anne, explains:

“Unless you’ve experienced it, you probably never think that a listing – just a medicine on a list – is really going to change someone’s life. But it did, it does, and it will. We are living, breathing evidence of that.”

We are proud to share Millie’s story and those like hers, and support the call for a stronger, faster and fairer PBS. For people living with cystic fibrosis and other serious conditions, every day matters.

Read Millie's story: https://www.strongerpbs.com.au/milliesstory

Save the date for the WORLD FESTIVAL OF MAGIC! We’re excited to share this fantastic FREE event, brought to you by Lions...
02/09/2026

Save the date for the WORLD FESTIVAL OF MAGIC! We’re excited to share this fantastic FREE event, brought to you by Lions Club Inc. Get ready for an exciting night of magic, entertainment and all-new acts! ✨🎩

TICKETS: One ticket per person attending the show (Children must be accompanied by an adult)🎟️

Please call 07 3810 2587 or email [email protected] for tickets and enquiries.

Upcoming dates:
Cairns: Thursday 22nd October 5pm and 7pm
Townsville: Sunday 25th October 2pm
Mackay: Monday 26th October. Time yet to be confirmed
Rockhampton: Tuesday 27th October 5pm
Bundaberg: Wednesday 28th October 6pm
Gold Coast: Friday 30th October 5:30pm and 7:30pm
Toowoomba: Sunday 1st November 12pm
Noosa: Tuesday 3rd November 6pm

World Festival of Magic has been organised as a special FREE event to bring joy and laughter to children, teenagers and families, kindly sponsored by the local business community and brought to you by the Lions Club.

01/09/2026

Did you know Crazy Hair Day is now Styles and Smiles for CF?

It is even more fun and inclusive, because everyone can choose how they want to be bold!

Wear a bright lipstick to work, throw on a sequinned blazer or choose a silly hat. School students could wear their favourite colourful shirt, add a bold accessory or spray their hair a bright colour.

The possibilities are endless. Simply choose something bold that feels comfortable for you, have fun and raise funds and awareness for people living with cystic fibrosis.

How will you show your style and make someone smile?

Sign up today: https://stylesandsmilesforcf.raiselysite.com/

or

Contact: [email protected]

A new grant from Emily’s Entourage is supporting research into gene-corrected airway stem cells as a potential long-last...
31/08/2026

A new grant from Emily’s Entourage is supporting research into gene-corrected airway stem cells as a potential long-lasting therapy for cystic fibrosis.

The research aims to help corrected cells grow, survive and repair lung tissue over time. While still in its early stages, this approach could offer hope for people with CF who are not eligible for current CFTR modulator treatments.

Read more: https://cysticfibrosisnewstoday.com/news/new-grant-funds-research-airway-stem-cells-lasting-cf-care/

Inhaled TRNA Therapy Restores CFTR in Cystic FibrosiPromising new research has shown that an inhaled tRNA therapy can re...
31/08/2026

Inhaled TRNA Therapy Restores CFTR in Cystic FibrosiPromising new research has shown that an inhaled tRNA therapy can restore CFTR protein production and function in laboratory models of cystic fibrosis caused by nonsense mutations.

The approach has been tested in cells, mice and patient-derived organoids. While further research is needed to assess its safety and effectiveness in people, the findings offer hope for people with CF who may not benefit from existing modulator therapies.

Read more: https://www.miragenews.com/inhaled-trna-therapy-restores-cftr-in-cystic-1734488/

Address

354 Waterworks Road
Brisbane, QLD
4060

Opening Hours

Monday 8:30am - 5pm
Tuesday 8:30am - 5pm
Wednesday 8:30am - 5pm
Thursday 8:30am - 5pm
Friday 8:30am - 5pm

Telephone

+61733598000

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