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.
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.
Where Your Support Goes
Optimal Patient Response Initiative (OPR)
A first-principles, patient-driven framework designed to optimise how patients navigate, respond, and survive cholangiocarcinoma. Think of this as the operating system (OS) continuously working in the background
- Refining & Expanding OPR – Advancing patient response strategies and processes.
- Refining & Expanding Navigator Journal Series: Includes Personalised Family or Business Editions – A structured roadmap tailored to each patient’s journey.
- Patient-Endorsed Medical Professionals Registry – AI-driven system ensuring patients are connected with cholangiocarcinoma-specific expertise and high-flow experience, essential for this disease.
- Second Opinion Project – Ensuring timely, non-pressured access to life-changing expert reviews.
- Next-Generation Sequencing (NGS) Integration – Expanding patient access to precision diagnostics.
- Next Steps Program – Embedding patient navigation teams at the point of diagnosis.
- Patient & Caregiver Symposiums – Bringing patients, clinicians, and researchers together.
- Research Paper: Engineering the Optimal Cancer Pathway – A blueprint for increasing survival rates.
- University Scholarship Sponsorship – Funding the next generation of cholangiocarcinoma researchers.
By supporting these initiatives, you help engineer better outcomes and improve survival for cholangiocarcinoma patients.
Transforming cancer response doesn’t happen in isolation—it happens through community, momentum, and collective action. Our innovative projects don’t just raise funds; they ignite awareness, empower patients, and accelerate change.
Light Australia Green (LAG initiative):
Illuminating Hope, Driving Awareness
The Light Australia Green (LAG) Initiative is a year-round national movement dedicated to raising awareness about bile-related cancers. Throughout the year, we engage in impactful events, including:
- Patient-Medical Symposiums: Bringing together patients, healthcare professionals, and researchers to share knowledge, advancements, and personal stories, fostering a collaborative approach to treatment and care.
- Major Awareness Events: Community gatherings, educational workshops, and media campaigns designed to inform the public and encourage proactive health measures.
These efforts culminate in World Cholangiocarcinoma Day, observed annually on the third Thursday of February. In 2025, this day falls on February 20. During this time, we amplify our activities with:
- Landmark Illuminations: Iconic structures across Australia are illuminated in green, symbolizing hope and unity in the fight against bile-related cancers.
By uniting patients, clinicians, and the public, the LAG Initiative fosters a nationwide conversation that accelerates action, education, and support for those affected by bile-related cancers.
The Cholangio Challengers initiative is your personal fundraising and awareness hub, designed to empower patients, caregivers, families, and businesses to transform personal stories into community-driven support for critical research.
Get Started with Cholangio Challengers:
- Create Your Profile Page: Set up a personalized page to share your journey.
- Share Your Story: Inspire others by detailing your experiences and motivations.
- Involve Family, Friends & Colleagues: Expand your support network by inviting others to join your cause.
- Start a Challenge or Support One: Whether it’s a marathon, walk, baking contest, or any creative endeavor, initiate a challenge or back existing ones to raise funds and awareness.
- Easy Setup & Social Media Integration: Our platform ensures a seamless setup process with integrated social media tools to maximize your reach.
Need Assistance?
For support or inquiries, please contact:
- Claire: 0415 153 522
- Jill: 0418 799 926
By participating in Cholangio Challengers, you’re not just fundraising; you’re becoming a vital part of a community dedicated to advancing research and improving outcomes for those affected by bile-related cancers.
Honouring Legacy, Advancing Research
This initiative ensures that every story lives on. By funding CCF research scholarships for young scientists, we honour patients and families while fostering the next generation of breakthrough researchers in bile-related cancers.
What is Cholangiocarcinoma
Pronounce chol·angio·carcinoma
‘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.
Listen to Description
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
As Newly diagnosed patients & caregivers:
We are in the same boat.
Some know how to row.
Some don’t—yet.
Those who can row must teach.
Those who can’t must learn.
We will help you help yourself. But you must row.
Treatment alone is not enough. We must learn to row—and row well.
To row well, start with the five steps above this message.
Order Your Free Patient Navigator Journal
Follow the steps—it breaks the overwhelming challenge into manageable pieces
Connect, Learn, and Take Action
Our community of patients and caregivers offers a supportive and constructive space to learn, share, and grow together.
This is a team of individuals like you, committed to strategic support, shared experience, and actionable insights.
The fastest way to learn is by connecting with those who have walked this path before you.
Cholangiocarcinoma Australasia Community
For Patients & Caregivers
A dedicated space for patients and caregivers to exchange experiences, support one another, and navigate the journey together.
A dedicated space for patients and caregivers to exchange experiences, support one another, and navigate the journey together.
Cholangiocarcinoma Caregivers & Support Network
For Caregivers Only
A safe and understanding environment exclusively for caregivers to connect, share challenges, and support one another.
Meetings & Events
Online & In-Person – Open to All Members
A place to express, learn, and connect through:
✔ Group discussions & shared insights
✔ Guest speakers & expert talks
✔ Education sessions & resources
Cholangio Challengers –
Your Personal Fundraising & Awareness Hub
✔ Create Your Profile Page
✔ Share Your Story
✔ Involve Family, Friends & Colleagues
✔ Start a Challenge or Support One
✔ Easy Setup & Social Media Integration
Need Help? Contact Claire at 0415 153 522 or Jill at 0418 799 926.
Stronger Together. Smarter Together.
Join, Learn, and Make an Impact.
Patient-Endorsed Medical Professionals
This list has been carefully assembled based on patient endorsements—real experiences from those who have walked this path.
Expertise in cholangiocarcinoma isn’t optional—it’s essential.
Having the right medical team isn’t just a choice; it’s a life-or-death decision.
Register for a Mentor: For Patients & Caregivers
Connect with someone who truly understands.
Speak with a mentor who has lived through the journey, faced the same challenges, and can help guide you forward.
✔ Gain insight from real experience
✔ Stay on the right path
✔ Discover opportunities you may not have seen
You are not alone—get the support you need.
Sign Up for the CCA Email Newsletter
Stay updated with the latest research, trials, and strategies, webinars, and group sessions as they become available.
How You Can Support Us
How It Began:
In 2014, Steve Holmes lost his younger brother Graeme to cholangiocarcinoma. Two years later, he faced the same devastating diagnosis. His wife, Claire, searched desperately for answers—but found nothing.
- No skilled cholangiocarcinoma professionals.
- No Systemic or targeted treatments
- No knowledge resources or roadmaps.
- No structured response.
- No patient networks.
- Survival was considered 1- 2 years.
As Steve puts it, “There was no manual for this cancer, we are completely blind and so are the doctors.” So, he and Claire built one. They created the Patient Navigator Journal and later founded The Cholangiocarcinoma Foundation Australia—to provide support, strategy, and structure for patients facing this battle.
To engineer a better patient response, increase survivorship, and drive breakthroughs, we need funding to:
- Expand and refine the Optimal Patient Response (OPR) system—the missing link in patient care.
- Develop more patient-centered resources—giving every patient a clear roadmap from diagnosis to treatment and beyond.
- Scale advocacy and research initiatives—ensuring cholangiocarcinoma gets the focus it demands.
Join Us. Fund OPR. Save Lives.
Your contribution directly impacts patients and research. You can:
- Make a direct (no-fee) donation to support ongoing projects. Email Claire for bank details.
- Fund a specific research initiative focused on prevention, early detection, or patient empowerment. Contact Claire for more details.
Create a Lasting Legacy: Research Naming Opportunities
Families, businesses, and communities can secure exclusive or shared naming rights by funding a research project. Your contribution will be:
- Recognised – Public acknowledgment of your support.
- Remembered – A lasting legacy honoring loved ones.
- Transformative – Fueling advancements in early detection and prevention.
For more information, contact Claire or Jill at Jill@cholangio.org.
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.