CCF Australia is a professional ‘Patient-Centric’ and ‘Patient-Led’ Organisation, that places the needs of the patient and their caregiver first.

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Welcome to the Cholangiocarcinoma Foundation Australia

We Provide the Bridge

We know that newly diagnosed patients simply do not know what they do not know—yet absolutely must. This initial naïveté is often the biggest obstacle and risk a patient faces. We provide the bridge between diagnosis and survival and the pathway beyond. We give your hope the structure it needs to move beyond the diagnosis.

Improve Survival – Eliminate the Avoidable

We’re laser-focused on improving survival rates by eliminating avoidable deaths due to a lack of knowledge, understanding, and access.

Targeted Education to Equip and Empower

We provide both support and training to better equip and empower a patient’s capacity to effectively respond from the moment of diagnosis. This extends to family and support networks who all play an equally important role.

Better Utilisation of Science

While scientists work tirelessly to innovate new cures, your efforts and funding go beyond just supporting this research. They help us to better utilise and implement these scientific breakthroughs, transforming them into highly targeted and powerful tools for the patient’s toolkit. This ensures that innovations don’t just sit on a shelf but become actionable resources, equipping and empowering a robust and effective response from the moment of diagnosis.

Better Utilisation of Evidence-Based, Best-Practice Medical Advancements

While cutting-edge medical practices continue to evolve, your support ensures these advancements reach the people who need them the most. We better utilise and implement evidence-based and best-practice medical methods, transforming them into actionable, patient-centered resources. This enhances the standard of care, facilitates stronger patient-clinician partnerships, and ultimately boosts survival rates.

We place the needs of the patient and caregivers first. Striving to be current, we are a professional, ‘Patient-Centric’ and ‘Patient-Led’ organisation at every level.

For a more in-depth view of who we are, what we do, and how please click here

Cholangiocarcinoma is a cancer of the bile ducts.

It is often referred to as Biliary Tree Cancer (BTC) or Bile Duct Cancer (BDC)

Cholangiocarcinoma (CCA) is a cancer that begins within the lining of the bile ducts that originate from the liver where bile is produced. The bile ducts are like an estuary of small rivers feeding into one common bile duct that leaves the liver flowing to the gallbladder and finally, the small intestine (Duodenum) read more here

Subsets of Cholangiocarcinoma

CCA has 3 primary diagnosis locations of origin; Intrahepatic, Perihilar, and Distal. It is very important that you have a basic grasp of your exact CCA diagnosis.

It should also be noted that the ‘Gall Bladder’ falls under ‘Extrahepatic‘ as does Ampular of Vater; The Ampulla of Vater is the spot where the pancreatic and bile ducts release their secretions into the intestines. (not shown in the diagram)

cho·lan·gio·car·ci·no·ma 
kō-lăn′jē-ō-kär′sə-nō′mə

  • Chol’e; from the Greek cholḗ, meaning “bile.” Bile is a yellowish-green liquid secreted by the liver. The Greek cholḗ is also source of the word cholic.
  • angio; from Latinized form of Greek angeion “case, capsule, vessel of the body,” diminutive of angos “vessel, jar, vat, vase,” which is of unknown origin.

When we are diagnosed, we do not know what we do not know, but absolutely must.

CCF Australia was born on the single concept of;

  • Helping to better equip and empower the patient and their caregiver’s capacity to mount a robust and effective response to a cholangiocarcinoma diagnosis.
  • And to ensure that every patient has the benefit of current experience and expertise from the moment of diagnosis.

That is what we do first and foremost, and it is what the CCA Patient Toolkits are designed to help you with, toolkits are designed to cut through the noise and guide you in the right direction from the moment of your diagnosis

An Empowered Patient is an informed patient;

Let’s clarify that:

Informed Patients
  • An informed patient is one who understands the information provided in a manner that they can confidently act on it.
  • Only an informed patient can make informed consents and decisions. This is a critical yet overlooked pillar of a patient’s health response.
The Empowered Patient
  • An empowered patient is an informed patient who is open and willing to engage with research information beyond the diagnosing physician’s office.
  • Empowered Patients have better survival outcomes
We help you become Informed
  • CCF Australia is dedicated to the ongoing development and refinement of the Optimal Cancer Patient Pathway (OCPP), a vital element in surviving cholangiocarcinoma.
  • We help bridge the gap between the science, medical, and cholangiocarcinoma communities.
  • We distill and simplify the latest research and options, to better equip and empower your understanding.
Assumptions are a cancer

With Cholangiocarcinoma there is a constant inflow of new information and opportunities that takes time to reach the practicing medical professionals. This is why you must become an empowered patient who can advocate and ask questions – this is a critical distinction to survival outcomes. Yes, targeted questions – (sometimes very persistent) save lives. Medical professionals are only human and suffer from overwork, and mistakes and simply do not have the capacity to always be current on the knowledge that matters to your specific diagnosis. PLEASE DO NOT ASSUME – Ask the questions that need to be asked.

Hope is a Real Thing

As patients, we know that “HOPE” is very often the only tool left in our toolkit, we also know that hope is an essential driver of opportunity beyond the diagnosing physician’s office, so we strive to provide your ‘hope’ with the structure it needs to move forward.

Patients have Caregivers, Family, and Community

We recognise that cholangiocarcinoma affects not only patients but also their caregivers, families, colleagues, healthcare providers, and supporting workplaces. Therefore, our support extends beyond the patient to all those affected by this disease. We look to engage and synchronise the whole community that arises to support one patient. We also recognise the core fabric and many attributes of such a committed and dynamic community.

We are aligned and affiliated (non-financially) with CCF USA and CCF New Zealand; We work very closely together to ensure everything that can be done is being done today.

Abbreviations

There are many abbreviations in healthcare. Therefore it is important that you understand CCA is the abbreviation for Cholangiocarcinoma and CCF is the abbreviation for Cholangiocarcinoma Foundation (Australia)

Supporting the science

While scientists work tirelessly to innovate new cures, your efforts and funding go beyond just supporting this research. They help to better utilise and implement these scientific breakthroughs, transforming them into highly targeted and powerful tools for the patient’s toolkit. This ensures that innovations don’t just sit on a shelf but become actionable resources, equipping and empowering a robust and effective response from the moment of diagnosis.

Focus

  1. Science to Survival: Ensuring Evidence-Based and Best Practice is fully utilised and forms an integral part of the Patient and Clinicians toolkit.
  2. Innovation & Application: Developing new innovative patient resources that improve knowledge, understanding, and process for today’s patients.
  3. Awareness & Advocacy: Disease, Patient, Caregiver, and Community and Workplace.
  4. Patient Genomic Panels: Capturing the acquired expertise of patients – Breaking Down Complex Cancer Science, Simplifying and distilling for patinet use.
Join Us

We really do need your help;

Join us in our commitment to making a meaningful impact in the fight against cholangiocarcinoma and improving the lives of those affected by this disease. Email your interest.

Get Involved

  1. Donate: Your support, big or small, takes us one step closer to new treatments and cures.
  2. Fundraise for Us: Be part of the breakthrough by organizing events, campaigns, or workplace giving.
  3. Volunteer: Become a Friend of CCF Australia and champion our cause.
  4. Leave a Legacy: Ensure we can impact the health and wellbeing of Australians for generations to come.
  5. Partner with Us: Join us in our fight against disease and be part of something bigger.

Patient-First Funding

Our funding-per-project model is a patient-first initiative that allows us to minimize and streamline organisational costs to maximise the flow of net funds to the actual development and delivery of new innovative patient resources.

This model provides higher quality transparency and collaboration, aligning patient survival, donors, and social impact investors who share our goal of improving patient survival through Patient Empowerment and better utilisation and delivery of current evidence-based research and resources.

We welcome funding from individual donors, private and government organizations, and companies interested in making a meaningful contribution to patient-empowered outcomes.

CCA Patient Toolkits

We highly recommend that you begin by familiarising yourself with the ‘Patient Toolkits.’ Toolkits are a patient’s essential checklist, navigator, and guide. Content is distilled from the collective knowledge, experience, and wisdom of cholangiocarcinoma survivors.

TOOLKITS: (1) ‘Mutational Toolkit’ and (2) ‘Questions For Your Doctor Toolkit’. Both can be accessed via the ‘CCA Patient Toolkit’.

Important Directory

1.

CCA Patient Toolkits:
Patient Navigator, Mutations & Biomarkers, Essential Questions

Access Toolkits

2.

Newly Diagnosed:
About Cholangiocarcinoma for Patients and Caregivers

Learn more

3.

Medical Professionals:
Healthcare Providers, Medical Professionals, Med Support

Learn more

Projects you are supporting

CCA Digital Toolkits

Support the evolution of our all-screen digital toolkits tailored for CCA patients: Toolkits provide the optimal cancer patient pathway and your contributions will fuel the continuous development and maintenance of these invaluable resources. Invest in this transformative initiative and join us in empowering patients on their journey against cholangiocarcinoma.

Patient CCA Journals

Support our patient empowerment initiative. Your contribution will enable the production and free distribution of our invaluable toolkit and navigator journals – the optimal cancer patient pathway. OR Sponsor your own personalised limited edition today, and join us in making a vital difference.

Remote 2nd Opinions

Support our ‘2nd Opinion Project’ – a critical patient-first initiative. Your contribution will enable remote access to diagnosis-specific medical experts for cholangiocarcinoma patients across Australia, promoting second or third opinions. Donate today to help solve a significant challenge and potentially save lives. Join us in putting patients first.

Patient Registry & Genomic Portal

Support our CCA-specific Patient Registry and Portal. Your donation helps patients contribute their diagnosis and genetic data, enhancing our understanding and paving the way for more accurate response initiatives. Fund this critical patient initiative today and join us in revolutionising cholangiocarcinoma care.