A Peer to Peer, Patient to Patient, Caregiver to Caregiver community.

We are about coming together around a common challenge and sharing the effort. We are about building a future beyond the convenience of statistics, we must not dwell and expend energy on what we cannot control, we must find our own momentum together.

The Globally Connected Patient and Caregiver Collective

The Globally Connected Patient and Caregiver is a newer phenomenon, that has risen up from social media platforms. This has provided a unique and empowering opportunity not seen in previous medical history. As a patient and caregiver collective, we are both contributing and benefiting from real-time knowledge, experiences, and wisdom. This is not something available to the medical community anywhere on the planet, but it is to us.

Highly targeted

Our collective is a highly targeted Information resource that is contributing to patient outcomes in real today, and it is only going to improve as technology, biotechnology, and patient education move closer together. If you are a patient today, you will benefit from being connected.

What we do

CCA Australasia centralises, distills, and simplifies the information avalanche to help equip and empower our patients and caregivers. We are patients, caregivers, advocates, and supporters working together to deliver today’s updated information and medical breakthroughs to the “Newly Diagnosed Patient and Caregiver.” TODAY!

The First-line Treatment

Every Newly Diagnosed Patient and Caregiver must receive their first-line treatment at the moment of diagnosis. The surgeon/oncologist must provide a highly-targeted “first-line Informational treatment.” A CCA Patient Toolkit that gives provides immediate direction and purpose when they leave that room.

Patients are dying too soon or needlessly from a lack of specific and relevant information at the time of diagnosis.  They are allowed to leave without any specific tools to move forward.

Final Word

I am one patient that knows this to be exacting and true both for myself and the many that I mentor and assist. I am alive today because I benefited from the information here on this page. I must underline that there was no priority list when I was diagnosed, nor were there any known survivors. I have had a lot of good luck that lead to my success, most of which was centred around personality and information. I have sought to centralised my good luck and the experience gained into a simple yet highly target information environment to benefit of the patient and all those that matter most to them.

A fellow Patient

This Centralised Knowledge Hub began its life as our personal library, a place to store the fast-mounting information avalanche on Cholangiocarcinoma.

NOVEMBER 2016: Claire and I began from a baseline of shock, overwhelm, and disruption. We could not spell or pronounce such a word as Cholangiocarcinoma, which just added to our anxiety, stripping away any remaining poise or composure that we had. Claire began by just blindly digging with Doctor Google, she had no idea of what was to come, as she moved further into an endless search for tangible information of such rare cancer.

Most search results lead Claire in the direction of the USA, Thailand, and Vietnam. Other parts of the world including the UK and Europe were very lean on useful data and projected more dire interpretations.

Claire’s searches for information were generating significant piles if not mountains of disconnected and random facts and theories – she needed help, so I built a basic website to house and file it all, our personal library on Cholangiocarcinoma.

As I felt up to it I categorised and evolved the website to suit our purposes, it also became clear that we should share our knowledge with others in the same predicament. We wanted to give other CC Warriors a better starting point than we had. The website was also a great place to house my own story and evolve it as I progressed through my journey, which I named¬† “My Walk with Cholangio the Beast.”

That’s it… the origins of this Centralised Knowledge Hub on Cholangiocarcinoma. We have evolved this is Australasian based and with a view to align with other better-resourced organisations such as CCF – The Cholangiocarcinoma Foundation based in the USA.

Regards Steve & Claire
Phone: +61415153522
Email: steve@cholangiocarcinoma.com.au
Email: claire@cholangiocarcinoma.com.au

My CCA Patient Page

My Personal Page