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

Steven West

Testimonial
Empowering Patients by Bridging Gaps and Breaking Information Silos.

Cholangio Survivor

CCF Australia Team Member

Oklahoma USA

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Supporting CCF Australia initiatives is to support patient survival

Testimonial by Steven West

Cholangiocarcinoma is a rare disease; we all know that. Not that many years ago, it was a really rare disease. You might ask, what do I mean by that? Well, there is some research out there that states the incidences of this disease are on the increase, and I accept that they might be.

However, in the digital age, information is more readily available than at any other time in human history. So, prior to us being a very connected world, information was often only available in silos. The more distant or rural you were, the less likely you learned about such things as Cholangiocarcinoma. The internet helped the medical community learn more about this disease, and subsequently, I believe, more and more patients are getting the correct diagnosis. In 2015, I too was misdiagnosed, and unfortunately, we still have patients misdiagnosed, but it is getting better.

But just as the medical community benefited from a more connected world, so has the patient experience. Organizations such as the Cholangiocarcinoma Foundation Australia work hand in hand with other cholangiocarcinoma organizations around the world. A wealth of resources and knowledge is available to patients like never before. Today, through organizations such as this, patients share experiences, sit on advisory boards, and work directly with the government to help one another throughout the world.

Please support the Cholangiocarcinoma Foundation Australia’s Patient Initiatives – I do :)

Projects you are supporting

Optimal Patient Response (OPR)

From Passenger To Co-Pilot: An Initiative and a carefully choreographed process that enhances healthcare by transforming the standard-of-care into a more comprehensive ‘standard-of-response’ process. At its core are printed Patient Navigator Journals and supporting digital web-app suite, all designed to better equip and empower the patients capacity to effectively respond and survive their diagnosis. A clear, step-by-step process supported by CCF peer-trained Navigators, Coaches, Hospital Coordinators, and a constructive peer-to-peer community, replacing chaos with calm, and overwhelm with direction.

Light Australia Green

Galvanising Collaboration: The Light Australia Green Initiative is a comprehensive annual campaign focused on raising awareness and driving engagement in bile health and cancer response. Through targeted events, such as hospital-hosted symposiums, landmark illuminations on World Cholangiocarcinoma Day, and an annual conference, the initiative unites key stakeholders to promote collaboration, education and progress in managing bile-related cancers.

BILEflow: Bile Health

BILEflow Stands on its own as a research-driven initiative focused on understanding bile composition and health. Aimed at identifying chronic precancerous conditions, thus providing preventive measures for at risk /family and patient monitoring.

BILElink For Patients

Support our CCA-specific BILElink For Patients:  A patient-led, AI-assisted central intelligence platform that matches patient diagnoses with patient-endorsed medical professionals, remote 2nd opinions, remote collaborations, and clinical trials by mutation type.