The human faces rewriting Australia’s most common rare disease, cystic fibrosis

New national data from the Australian Cystic Fibrosis Data Registry (ACFDR) has revealed a significant shift in the trajectory of cystic fibrosis (CF), with Australia’s most common rare genetic disease no longer considered predominantly a childhood condition.

A growing number of Australians living with CF are reaching adulthood, pursuing careers, forming relationships, starting families and navigating the complexities of a lifelong condition across every stage of life.

“Just a generation ago, many Australians born with CF were not expected to live into adulthood,” said Dr Jo Armstrong, CEO of Cystic Fibrosis Australia. “Life was often shaped by repeated hospital stays, malnutrition, social isolation and the unnerving knowledge that time could be so unfairly limited. But today, what is possible for those living with CF, is a changing story.”

The latest ACFDR data shows there are now 3,916 Australians living with CF, with adults accounting for 62% of the CF population, with both figures representing record highs. The milestone reflects a profound change in what life with CF can look like, with more people reaching life stages once considered rare, including professional careers, parenthood and new milestones in adulthood. At the same time, life expectancy continues to improve while hospitalisations continue to decline.

The release of the latest Registry findings coincides with the launch of CF: There’s More to the Story, a new multimedia exhibition and national collaboration between Vertex Pharmaceuticals and Cystic Fibrosis Australia, designed to place a human face on the evolving reality of cystic fibrosis.

Created by award-winning Melbourne photographer and filmmaker Alexandrena Parker (37), who also lives with CF, the campaign captures a generation of change through intimate portrait photography, personal reflections and short films. Through Parker’s lens, six Australians whose lives collectively span almost six decades reveal the experiences, challenges and possibilities behind the statistics.

Reflecting on her own journey, Parker recalls reading as a teenager that she was unlikely to live beyond her early thirties. Determined to make every year count, she went on to build a successful career photographing some of Australia’s most recognisable brands.

“These stories celebrate possibility, but they’re also honest, personal, and revealing. This campaign asks people to look closer at the stories behind each face, the strength, complexity, resilience and hope, and the parts of CF that often remain invisible. There is no single story of CF anymore and that is what I wanted this work to show,” said Parker.

For Jess Ragusa, motherhood was once considered unlikely. Today, she and her husband are raising two young boys, reflecting another emerging trend highlighted in this year’s Registry data where more Australians living with cystic fibrosis are reaching the stage of starting families.

Twelve-year-old John Berman represents the next generation living with CF. A passionate young athlete and advocate, John has already shared his experience publicly, including at Parliament House. His parents say his journey with cystic fibrosis has shaped him into a courageous young person with resilience beyond his years.

Elisha Whitfield, Senior Country Manager at Vertex ANZ, said “For more than a decade, Vertex has had the privilege of working alongside the CF community in Australia. This exhibition shines a light on the people behind the diagnosis, the experiences that are often unseen, and the importance of continuing to listen, learn and work together to help improve the lives of people with CF.”

The increasing number of Australians living longer with CF also highlights the evolving health needs of the community. Dr Armstrong emphasised the importance of sustained investment in multidisciplinary care, research, innovation and services that support people throughout every stage of life.

“Progress should not be mistaken for the finish line,” she urged. “Cystic fibrosis remains a serious, complex and lifelong condition requiring ongoing treatment, monitoring and care. This unique campaign is important because it shows the people behind the data and the realities of living with CF.”

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