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Welcome to the Cholangiocarcinoma Foundation Australia

We exist to help better equip and empower your capacity to mount an effective, robust response from the moment of diagnosis.

CCF Australia is a professional ‘Patient-Centric’ and ‘Patient-Led’ Organisation, that places the needs of the patient and their caregiver ahead of the organisation that serves their effort. 1,300 people are diagnosed with this rare and devastating cancer of the bile ducts in Australia each year.

Cholangiocarcinoma is a cancer of the bile ducts.

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

Three Subsets of Cholangiocarcinoma
  1. 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
  2. CCA has 3 primary diagnosis locations of origin; Intrahepatic, Perihilar, and Distal.
  3. It is very important that you have a basic grasp of your exact CCA diagnosis.

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. 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.

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.

Current Evidence-Based and Best Practice

We focus on better utilisation and implementation of the most current evidence-based research, resources, and best practices. We develop innovative patient knowledge and support resources that improve understanding, decision-making, and access.

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)

3 Specialist Areas

Cholangiocarcinoma Awareness: Disease, Patient, Caregiver.

Utilizing and working with Medical and Science Communities: Specialist Genomic Patient Panel. New Innovative Patient Resource initiatives/projects.

The Empowered CCA Patient: The ‘Informed Patient’ is the patient that understands in a manner that they can confidently act on it. An informed patient is an ‘Empowered Patient’- Empowered Patients increase their survival outcomes.

Join Us

We really 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.

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.

Bridging the Cancer Comprehension Gap

Our mission is to bridge the gap between the medical and cholangiocarcinoma communities. We distill and simplify the latest research and options, empowering patients with a comprehensive understanding for informed decision-making and effective response.

Hope is a Real Thing

As patients, we know that “HOPE” is very often the only tool left in our toolkit, so we strive to provide your ‘hope’ with the structure it needs to move forward.

CCA Patient Toolkits

Discover our Patient and Caregiver Toolkits, distilled from the collective wisdom of cholangiocarcinoma survivors. Sign in via email for updates on these essential resources to effectively support your efforts.

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 Support Communities. CCA Resources

Learn more

Projects you can support

Digital Toolkits

Help fund the continuing development of our CCA patient-centric digital toolkits. Your support will help us continue developing and maintaining these tailored toolkits.

A5 Journals

Journals are the physical extension of the toolkits: Purchase a journal to be delivered to a patient free of charge or fund your personalised limited edition of journals.

2nd Opinion Project

Not-for-profit: Solving a significant problem by providing patients across Australia with remote access to diagnosis-specific medical professionals  for a second or third opinion

Patient Genomic Data

Coming Soon: Portal for patients to contribute their CCA Biomarker and Mutation results to help our community build a better understanding and response.