CHOLANGIOCARCINOMA FOUNDATION

During 2015, we will fund over $300,000 in research. We also will be hosting our 3rd Annual Conference in 2016. Additionally, we provide a variety of patient services. One such resource is a 136-page book titled “100 Questions and Answers About Biliary Cancer” which is offered free upon request in both digital and printed formats. Our informational tri-fold brochure “Cholangiocarcinoma” is published in four languages, English, Chinese, Japanese and Spanish. We also have a double-sided page fact-sheet in English that can be used as a poster. Our twice-yearly newsletter is distributed to over 8,000 email subscribers. We have developed a Biliary Emergency Information Card to address an emergent need to facilitate physician-to-physician communication, assuring prompt and definitive medical treatment in a biliary emergency. Instructions on the card include specific emergency treatment guidelines and a Quick Response (QR) code that medical personnel can scan for additional information and resources. Patients and caregivers can easily download and print the card from the CCF website (http://cholangiocarcinoma.org/biliary-emergency-information-card/) and carry it in their wallets to give to health care providers. This card educates patients on symptoms of a biliary emergency and empowers them to be an active participant in their own care. Patients and family members are encouraged to call our phone number to speak with our President, Executive Director, or Chief Advocacy Officer who are all available to personally answer questions regarding current treatment options, clinical trials, leading medical institutions/teaching hospitals treating cholangiocarcinoma, and more, as well as to lend and ear and provide emotional support during this difficult time. During 2014, our website received nearly 230,000 hits (4,500 per week) from 112,000 unique users. Users stayed on the page for an average of 4 minutes and 43 seconds, looking at an average of over five pages per visit. Our website provides a wide variety of services to patients and family members including a patient-authored blog, a robust internet discussion board (with over 91,000 posts, 3,400 registered users, and over 13,000 topics of interest), e-publications, and other resources to help patients, families and medical professionals learn about diagnosis, current treatments and the latest research as well as links to organizations offering financial assistance to individuals. The website also connects users to our social media pages including Facebook (8,300 likes), Twitter (700 followers), as well as Instagram, Linkedin, Vimeo and YouTube. We have 25 webinars posted on our video sharing sites.