Online and In person Meetings
There are no meetings scheduled at this time please keep an eye on the facebook group (NZ patients & caregivers only) or the Facebook Page for announcements.
Alternatively visit and Cholangiocarcinoma Australasia Facebook Community for events, zoom sessions and symposiums
chol·an·gio·car·ci·no·ma
What is Bile Duct Cancer
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.
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Who We Are
Empowering Patients, Advancing Research, Enhancing Survival
If you have any problems with this website or can offer suggestions to improve please email claire@cholangio.org or contact Mandy Wallace.
Mandy Wallace
Mandy, a Patient (11 Year Survivor) is an experienced patient and international mentor. Mandy met Claire and Steve in Salt lake City Utah as recipients of the 2019 Cholangiocarcinoma Conference. Mandy (Blenheim) is the go to person for patient and caregiver support in New Zealand
- Email: mandy@cholangiocarcinomanewzealand.org
- Phone: 021 222 52211
The Cholangiocarcinoma Foundation Australia is a uniquely patient-led cancer research and advocacy organisation with deep knowledge and understanding of the cholangiocarcinoma challenge and other bile-related cancers, including liver, gallbladder, and pancreatic cancers.
Our approach simplifies the complexities of the cancer challenge into a format that better equips and empowers patients to understand, engage with, and more effectively respond from the moment of diagnosis. Central to this is our Patient Navigator Journal, an initiative which guides patients through a proven, systematic response process, transforming them from passive passengers into active co-pilots in their cancer response.
By simplifying the latest medical science and knowledge, patients can fully utilise and benefit from today’s options and opportunities. Backed by our peer-trained navigators and a supportive peer-to-peer community, we enhance survival outcomes and improve the quality of life for patients and their families. More details about the foundation
Our Innovative Supporting Projects
Light New Zealand (LNZ Green) and Light Australia Green (LAG initiative) : An annual campaign raising awareness and engagement at all levels through impactful events, including patient-medical symposiums, landmark illuminations that connect the public and patients, and conferences. These initiatives unite communities to advocate for and support our research and projects.
Cholangio Challengers: A fundraising initiative encouraging patients, supporters, and friends to create unique challenges—whether marathons, walks, or baking contests—turning active lifestyles into vital support for research.
The Remembrance Project: Honouring patients and families by funding CCF research scholarships for young, aspiring scientists focused on bile duct and bile-related cancers. This initiative ensures a lasting legacy while advancing critical research in the field.
How You Can Support us
Background: Steve & Claire Holmes
Claire and Steve Holmes, originally from Waikanae, migrated to Australia in 2005. In 2014, tragedy struck when Steve’s brother passed away in Palmerston North Hospital after being diagnosed with cholangiocarcinoma. In 2016, Steve himself faced the same devastating diagnosis but defied the odds, surviving from a late-stage, stage 4 setting.
Motivated by their profound personal experiences and a deep desire to improve survival rates, Claire and Steve Holmes set out to address critical gaps they had identified at many different levels in the fight against high-lethality bile-related cancers, such as cholangiocarcinoma. Continue reading ~
Make A Donation
Your contribution fuels our transformative patient-led projects aimed directly at improving survival rates, empowering today’s patients – today, and advancing groundbreaking research. You can simply make a donation or participate in a specific research initiative.
Research Naming Opportunities
Research project donors—including families, communities, and businesses—have the opportunity to create a lasting legacy or significantly advance vital research by securing exclusive or shared naming rights. This unique contribution ensures your impact is recognised, remembered, and drives transformative advancements for patients and their families.
Research Projects You Can Support:
- Project: Optimal Patient Response Initiative (OPR) Details
Research Title: “Transforming the Diagnosis process: Proving the Impact of Targeted Education and Navigator-Led Support on Survival Outcomes” - Root Cause Research: Analyse toxic bile conditions to advance prevention & early detection methodologies, reducing incidence. Details coming soon ~
Research Title: “Uncovering the Root Causes of Bile Duct and Bile-Related Cancers: The Role of Toxic Bile, Environmental Volatility, and Early Interventions”
Background: Steve & Claire Holmes
Claire and Steve Holmes, originally from Waikanae, migrated to Australia in 2005. In 2014, tragedy struck when Steve’s brother passed away in Palmerston North Hospital after being diagnosed with cholangiocarcinoma. In 2016, Steve himself faced the same devastating diagnosis but defied the odds, surviving from a late-stage, stage 4 setting.
Motivated by their profound personal experiences and a deep desire to improve survival rates, Claire and Steve Holmes set out to address critical gaps they had identified at many different levels in the fight against high-lethality bile-related cancers, such as cholangiocarcinoma.
Drawing on the knowledge and expertise gained from their unique lived experiences, they recognised that their starting point must be ensuring that today’s cutting-edge knowledge and advancements actually benefit today’s patients—Today!
Leading By Example: Research, Development and Implementation
This inspired the initiation of targeted research projects aimed at introducing a culture of response and developing the Optimal Patient Response (OPR). Their work is focused on designing and implementing innovative patient response strategies and processes that better equip and empower patients and families to respond more effectively to this devastating cancer.
A cornerstone of their work has been enhancing the understanding and integration of Next-Generation Sequencing (NGS), or molecular profiling, into these strategies to expand clinical trial access, improve treatment options, and drive better survival outcomes.
In addition, they prioritised highly targeted research initiatives, such as investigating the hypothesis that “toxic bile is the cause of bile duct cancer.” Their goal is to establish methodologies for early detection and to identify precancerous conditions—potentially before cancer has a chance to form.
To turn their vision into reality, Claire and Steve made significant personal sacrifices—including selling their house, cars, and life insurance policies—and fully self-funded the establishment of the Cholangiocarcinoma Foundation Australia. Through their vision and commitment, the Cholangiocarcinoma Foundation New Zealand was created to ensure New Zealand patients are not left behind and have access to cutting-edge knowledge and science.
Why Your Support Matters
Despite the progress we’ve made, the Foundation receives no funding from New Zealand, Australian, or other governments, agencies, organisations, or businesses. This work depends entirely on the generosity and shared vision of individuals like you. It is we together that can make the greatest transformations.
Your support enables us to:
- Continue developing life-changing patient strategies.
- Expand access to NGS integration, clinical trials and first line treatments.
- Drive targeted research focused on prevention and survival.
Join Us
We invite you to become part of this transformative mission. Your contribution—whether through funding, expertise, or advocacy—can help us create a future where patients and families facing cholangiocarcinoma have the tools, hope, and support they deserve.
We believe Well Equipped and Empowered Patients Have Greater Survival Outcomes:
OPR Research Project: “Transforming the Diagnosis process: Proving the Impact of Targeted Education and Navigator-Led Support on Survival Outcomes.” For more information or to express your interest in supporting this project, contact: Claire Holmes at claire@cholangio.org
About Optimal Patient Response Initiative (OPR)
The Optimal Patient Response (OPR) initiative simplifies the challenge of responding to cancer—by innovating, developing, and implementing patient response strategies. It works continuously to better equip and empower patients to understand, engage, and respond more effectively to their diagnosis from the moment it is made.
By breaking down complexities and enormity of the challenge, fostering active patient participation, and aligning these strategies with healthcare professionals, OPR aims to enhance survival rates, improve outcomes, reduce stress for patients and families, and alleviate healthcare burdens.
Guiding Principle
Simplification
➡ Increases Understanding
➡ Which Increases Engagement
➡ Which Enhances Effective Response
➡ Which Improves Survival Outcomes
This principle underpins OPR, transforming the diagnostic process and patient journey into a structured, proactive, and effective pathway to survivorship.
Key Components of OPR
1️⃣ Navigator Integration Session
A seamless extension of the diagnostic process, designed to provide immediate direction and support.
- What It Is:
- A triage session where patients meet a Patient Navigator and Clinical Nurse immediately after receiving their diagnosis.
- The Navigator introduces the Patient Navigator Journal, orienting patients and preparing them for the challenges ahead.
- The Clinical Nurse ensures all clinical and healthcare protocols are observed and aligned.
- Goal: Empower patients with tools and strategies to take control of their journey from day one.
2️⃣ Patient Navigator Journal
A systematic guide that simplifies complexities and enhances patient empowerment.
- What It Is:
- Transforms patients from passive recipients to active participants in their cancer response.
- Innovations Include:
- Tailored resources for different cancer stages, including late-stage outpatient services.
- Digital tools providing real-time updates and access.
3️⃣ Building Navigator and Nurse Teams
Specialised teams that form the backbone of OPR’s success.
- What It Involves:
- Developing Navigator and Clinical Nurse teams for hospitals and regional centres.
- Incorporating Patient/Caregiver Ambassadors to bridge communication gaps and ensure patient-focused care.
4️⃣ NGS Integration (Embedded in the GI Cancer Genomic Translator)
NGS Integration becomes a sub-component under the GI Cancer Genomic Translator to ensure its role aligns seamlessly with patient response strategies.
- What It Does:
- Simplifies molecular profiling, making Next-Generation Sequencing (NGS) data accessible and understandable for patients.
- Empowers patients to engage with clinical trials and advanced treatment options through informed decision-making.
- Builds genomic literacy for patients and their healthcare teams to maximise treatment potential.
5️⃣ Symposiums and Education Initiatives
Fostering collaboration and innovation among healthcare professionals and patients.
- What It Includes:
- Mock Multidisciplinary Team (MDT) presentations in hospitals.
- Educational workshops for GPs, nurses, specialists, patients, and caregivers.
- Goal: Build understanding, collaboration, and effective response strategies to benefit the entire care ecosystem.
How It All Works Together
Each component of OPR is interconnected:
- Navigator Integration Sessions provide the critical first step.
- The Patient Navigator Journal supports patients throughout their journey.
- Navigator and Nurse Teams ensure a seamless support system.
- GI Cancer Genomic Translator enhances genomic literacy and connects patients to cutting-edge treatments.
- Symposiums and Education Initiatives build a collaborative and informed care community.
A Message Before You Begin
Equip Yourself For Survival
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.
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
