World Cholangiocarcinoma Day

Let's All Light Australia Green

Thursday 20th February 2025

The Missing Clinical Link: A Structured Patient Response

Cholangiocarcinoma isn’t just hard to treat—it lacks a structured patient response.

Our Optimal Patient Response (OPR) system fills this gap.
It doesn’t replace medicine—it optimises it.

  • It helps to improve treatment effectiveness by enhancing how patients understand, engage, navigate, and respond to their challenge.
  • We don’t wait for solutions—we build them.
  • We believe every patient needs a strategy. We work to ensure they have one.

We receive no government support—and we cannot do this alone.

Who We Are 

A Patient-Led Research and Advocacy Initiative

The Cholangiocarcinoma Foundation Australia is transforming how we respond to cholangiocarcinoma. Being patient-led we have a deep understanding of the challenge. We do not just advocate—we build solutions.

View Our Team | Learn More

Why It Matters
Patients do not know what they do not know. The Optimal Patient Response’s (OPR) Patient Navigator Journal bridges this gap—better equipping an empowering the patient’s response.

Beyond Patient Support
We fund and drive research to optimise the patient response, expand next-generation sequencing (NGS) integration, develop early detection, and advance the development of cholangiocarcinoma-targeted treatments.

We Connect:

  • Patients with expertise and guidance
  • Clinicians and researchers with the latest insights and advancements.
  • Industry leaders to accelerate progress.

What is Cholangiocarcinoma

Chol‘ means Bile angio‘ means vessel or ducts carcinoma‘ means a cancer that originates in the protective layer that lines the ducts. (The Epithelial Layer). Therefore it is a cancer that originates in the protective lining of our bile ducts.

Bile duct cancer, or cholangiocarcinoma (CCA), forms in the inner protective lining of the bile ducts, known as the epithelial lining, which shields the ducts from toxic bile.

The liver produces bile, which helps digest fats. Bile ducts act like a network of pipes, collecting bile from the liver and transporting it to the duodenum, the first part of the small intestine.

Inside the liver, tiny ducts merge into two larger ducts that join just below the liver to form the common bile duct. A side branch, the cystic duct, leads to the gallbladder, a reservoir storing bile for release during fatty meals.

The common bile duct passes through the pancreas into the ampulla of Vater, where bile mixes with pancreatic enzymes before aiding digestion in the duodenum.

Newly Diagnosed: 5 Steps

How You Can Support Us

A Messages 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

“Your greatest resource is yourself—and the lived experiences of those who came before you: a resource often overlooked in the chaos.

When diagnosed with cholangiocarcinoma, chaos quickly invades, and our steady thoughts are lost in its avalanche. It is then that we must quiet our minds and let the chaos slide by. We all have power over our minds—but not over outside events. While we cannot control the fact that we have cancer, we can control how we respond to it.

This is how we shift our perceptions and begin to see the possibilities—our opportunities within this obstacle of cancer. Step by step, we find our rhythm and sense of control. By focusing on each small step and doing it well, we methodically achieve what others thought impossible. In doing so, we gain fresh momentum—we gain control.” — Steve Holmes, Survivor

Bridging the Gaps: Collaborating to Enhance Patient Survival

We collaborate with medical professionals, researchers, and industry partners to accelerate progress and improve survival outcomes. While medical professionals excel at diagnosing, treating, and caring for patients, they may not always address the broader challenges a cancer diagnosis presents.

With our deep, lived experience and understanding of cholangiocarcinoma, we work to bridge these gaps by preparing and supporting patients as they navigate their diagnosis and prognosis. By aligning expertise across science, healthcare, and patient advocacy, we ensure comprehensive care that empowers patients and enhances their quality of life.

If you would like to collaborate or provide assistance, please familiarise yourself with our CCF Australia Introduction and Guide.

Equip Yourself for Survival

In life—and in the science of life—nothing is immune to being knocked off its precarious pedestal of certainty, not even a cancer prognosis or the statistics that support it. The only certainty is this: there is no certainty. Life is woven from obstacles and the possibilities hidden within them—that is its very fabric.

Our opportunity begins when we pause to see the obstacle as it truly is, not as we fear it to be. Only then can we uncover the possibilities within—our opportunity, our new way forward.

“If the path is blocked, go around. If the fruit is bitter, throw it out. Sometimes, the longest way home is the quickest.”

— Steve Holmes

CCA Today

“CCA Today: Stay Informed and Empowered

CCA Today is a blend of a newsletter, email digest, and magazine—crafted specifically for cholangiocarcinoma and other bile-related cancers, such as liver and pancreatic cancers. Empowering patients empowers their support and increases survivorship. CCA Today seizes on the power of understanding to drive effective engagement.