How can you help us?
The People Resource is the X-factor in any successful human outcome. CCA Australia needs people of Character, Talent, and Connection at the centre of our initiative and effort, people who help transition CCA to the next level of reality – A reality and effort that can be measured and accountable in actual lives saved – not dollars raised.
Patients are dying too soon or needlessly from a lack of specific and relevant information at the time of diagnosis. It is our intention to change this “lack” and ensure every frontline medical provider delivers a CCA-Specific intro Kit to the Newly Diagnosed patient at the point of diagnosis – no later
What is CCA Australia?
A centralised Cholangiocarcinoma Community and knowledge Hub, by the Patients and Caregivers for the Patients and Caregivers.
What do we do?
As a patient-up initiative, CCA Australia’s “First-line” effort is to Educate, Equip and Empower the Patient and Caregiver with highly Targeted & Current CCA Information.
How do we do this/help you?
- CCA Australia is built around a “Road Map to Best Outcomes” model.
- CCA-specific “Intro” & “Patient Toolkit” is central to the Road Map Model
- We connect you with your specific peer groups and other relevant connections.
- We centralise, simplify and distill the collective knowledge, information & wisdom of successful Patients and Caregivers that have been before you.
- Deliver “Todays” most current breakthrough information “Today”
- Continue to find new initiatives that improve Patient Empowerment through awareness and implementation of what is learned.
Our biggest focus
- Ensure every Newly Diagnosed Patient receives a CCA Australia Patient Intro Kit at the point of diagnosis – no later
There are many breakthrough medical events occurring but information channels to the Newly Diagnosed Patient remain clogged and disenfranchised. We are focused on providing a resourceful information conduit that delivers ‘Todays’ breakthroughs ‘Today’ which in itself will increase much-improved patient outcomes.
Key milestone achievements to date
- CCA specific digital Intro Kit
- CCA Specific digital Patient Toolkit
- Physical Intro Kit & Patient Toolkit Notebooks are now in design mode.
- Centralised Knowledge Resource
- Australian and Globally Connected CCA Community
- Framework for “Cholangiocarcinoma Foundation Australia“
- Patient Mentoring (AU, NZ & Global)
CCA Australia is Globally Connected
See all CCA Global Connections on home page
- Cholangiocarcinoma Foundation (USA)
- CCF 2021 Sub Steering Committee
- CCF Conference Salt Lake City
- CCA NZ
- AMMF UK
CCA Australia Origins
Cholangiocarcinoma Australia began life in 2017 has a personal online library (& diary) for Claire and Steve Holmes. Claire began researching on the subject of Cholangiocarcinoma in her efforts to find information about this little-known deadly aggressive cancer. Steve her husband was the patient – “Extrahepatic Metastatic Stage 4” with just a 6 months survival outlook.
At that time there was little known about Cholangiocarcinoma other than it was a terminal outlook if surgery was not successful. There were no in-depth information resources via the Australian health system and Google was also very limited and dire. In-depth searches did not yield any successful patient outcomes to motivate Claire and Steve’s efforts.
Over time Steve made a remarkable recovery due to a very recent medical breakthrough, described as the biggest medical breakthrough since penicillin. In his recovery, Steve began reorganizing this website into a central resource hub so that other patients and caregivers to benefit. Cholangiocarcinoma Austalia continues to evolve quickly and in line with current medical breakthroughs.
Current initiatives are to establish the Cholangiocarcinoma Foundation Australia (in progress) as a not-for-profit entity to ensure the momentum here in Australia continues and keeps pace with global CCA initiatives. If you are reading this and can assist or help Claire and Steve achieve this please contact Steve.
Sharing is the greatest of all resources we humans possess. Steve & Claire Holmes