About Us

Who We Are

Patient-led Functional Cancer Research and Advocacy Organisation (charity)

The Cholangiocarcinoma Foundation Australia is a uniquely patient-led functional cancer research and advocacy organisation with deep knowledge and understanding of cholangiocarcinoma and other bile-related cancers, including liver, gallbladder, and pancreatic cancers.

Co-founded by Steve and Claire Holmes, with Steve as an eight-year survivor of late-stage, Stage 4 cholangiocarcinoma, the foundation develops and delivers vital cancer response strategies that enhance the standard of care. Tools like the Patient Navigator Journal transform complex medical information into effective, easy-to-follow steps, improving survival outcomes and driving innovation to benefit today’s patients with today’s science.

Guided by Steve’s extraordinary journey, the foundation’s mission is to develop and support early detection, curative treatments, and prevention, while fostering a supportive community. Now the largest bile duct patient community outside the USA, the foundation provides a vital blend of lived and professional expertise—serving as an essential resource for Australia and a model for addressing many other cancer types.

Cholangiocarcinoma: A Growing Health Crisis in Australia

Cholangiocarcinoma, an aggressive cancer of the bile ducts, is one of the fastest-growing health challenges in Australia, demanding urgent action and innovation.

Rising Incidence: Over 1,450 new cases are diagnosed annually—a 58% increase in just the past decade.
Changing Demographics: Previously seen in older adults, this cancer is now increasingly diagnosed in Australians aged 30 to 50.
Limited Treatment Options: Surgery is an option for only 15% of patients, with an 85% recurrence rate, leaving survival rates alarmingly low.
Survival Rates: For metastatic cases—the majority—survival remains just 2–5% at five years.
Early Detection Gap: With no early detection tools available, most patients are diagnosed at advanced stages, drastically limiting treatment options.

Our Mission
The Cholangiocarcinoma Foundation Australia is a uniquely patient-led functional cancer research and advocacy organisation (charity) dedicated to developing and delivering solutions to this critical health challenge. We focus on:

Prevention: Advancing understanding of bile composition and identifying toxic environments before cancer develops.
Early Detection: Developing testing methods to identify cancer early, particularly for at-risk populations.
Innovative Patient and Cancer Response Strategies: Equipping and empowering patients to respond effectively through tools like the Patient Navigator Journal.
Curative Treatment Research: Initiating and driving research initiatives to extend survival outcomes and improve quality of life.

What We Do
Our functional approach ensures patients are supported from diagnosis to treatment and beyond:

Empowering Patients: The Patient Navigator Journal transforms complex medical information into actionable steps, enabling patients to become active co-pilots in their care.
Simplifying Science: By translating the latest medical knowledge into accessible language, we ensure patients can fully utilise today’s treatment options.
Building Community: Through peer-trained navigators and a robust peer-to-peer support network, we enhance survival outcomes and improve quality of life for patients and their families.

Why It Matters
Cholangiocarcinoma is not just a diagnosis—it’s a devastating journey for patients and families. With the incidence rising and treatment options limited, early detection, prevention, and patient empowerment are critical to reversing the trend.

Call to Action
We need your help to drive change. You can support us by:

Advocating with local governments, media, and businesses for funding and resources.
Contributing to expand our early detection research and prevention initiatives.
Helping us enhance the Patient Navigator Journal program to transform patient journeys and improve survival outcomes.

Together, we can develop meaningful solutions for today’s patients while building a foundation for a brighter future.

A Message of Hope

“I cannot speak highly enough of the Patient Navigator Journal. I owe so much to the Cholangiocarcinoma Foundation Australia. The information and support I received were life-changing. When I experienced a recurrence, I knew exactly what steps to take because of the tools and knowledge Steve provided. Please support Cholangiocarcinoma Foundation Australia’s patient initiatives—I certainly do!”
— Lynette Williams, Survivor