As a rare and lethal disease, cholangiocarcinoma (bile duct cancer) lacks attention and resources. There is a vast unmet need for education across the entire disease spectrum from bench-to-bedside. Patient mortality rates are extremely high - it is estimated that less than 5% of patients diagnosed with cholangiocarcinoma (CCA) live beyond five years. As such, the Cholangiocarcinoma Foundation (CCF) continues to focus its efforts to educate all stakeholders in the CCA community-at-large about prevention, diagnosis and treatment options, including clinical trials.
Paramount to that effort, the 2017 Annual Conference has been developed with the following objectives: 1) To foster sustainable participation of the medical, research and patient communities in the field of CCA; 2) To increase the knowledge and understanding of attendees about key issues central to the prevention, diagnosis, treatment and cure for CCA; and 3) To encourage, strengthen, and support collaborations in the field of CCA research, including clinical trials.
A multi-disciplinary audience, including representatives of the scientific, medical and academic communities; policymakers, payers, regulators, industry, advocates, patients and caregivers will convene to present a diversity of perspectives focused on evidence-based opinion to summarize and compare emerging developments in basic, translational and clinical research defining the field of CCA. A global community of experts will review symptoms, incidence, and prevalence in high risk populations (prevention); examine epidemiological and pathological features of the heterogeneous group of 3 anatomically distinct CCA cancers (diagnosis); and review advances in oncology research that are likely to be clinically relevant (treatment and cure). In addition to a live webcast, sessions from all three days of the conference will be recorded and posted online for enduring viewing.
A new focus for 2017 will be the launch of the Engaging Patients in Cholangio (EPIC) program which will bring together the patient and research communities to advance patient engagement in CCA research. The session will include a panel discussion with 5 researchers from Centers of Excellence in CCA.
Another initiative to further integrate patients/caregivers into the medical and research communities through their participation is a Patient Speakers Bureau. CCF will conduct a recruitment and training session for patients/caregivers interested in speaking at conferences allowing them to share their unique perspective and empowering them to advocate on behalf of themselves and other CCA patients.
A program to partner mentors with newly diagnosed patients/caregivers called Cholangio Connect will be launched. Mentors will undergo training to learn how to guide patients and loved ones through the frightening emotions and harsh reality of navigating their journey with a rare disease.
Marketing outreach will be expanded in 2017 to include under-served populations; those with low health literacy, low income, older adults, rural communities and patients living in third world countries.
The 4th Annual Conference is also expected to be our largest event yet, providing even more hope and promise to putting an end to bile duct cancer.