The Cholangiocarcinoma Foundation
The Cholangiocarcinoma Foundation (CCF)’s mission is to find a cure and improve the quality of life for those affected by cholangiocarcinoma (bile duct cancer). Founded in 2006, in Salt Lake City, UT, by a family member who lost a loved one to cholangiocarcinoma, CCF has grown to become a leading U.S. (and increasingly international) resource in research, education, and public awareness.
Initiated in 2012, the International Hepatobiliary Neoplasia Biorepository (IHNB) is a global collaboration between CCF, Mayo Clinic, and multiple academic and medical centers to accelerate research for early diagnosis, novel therapeutics, personalized oncology, and improved clinical outcomes for patients with cholangiocarcinoma. The IHNB has assembled one of the largest bio-specimen repositories for biliary cancers worldwide and serves as a key resource for basic, translational and clinical research in bile duct cancer.
In 2014, CCF launched the International Cholangiocarcinoma Patient Registry (ICPR) to collect bile duct cancer patient information about the incidence and prevalence of cholangiocarcinoma and related disorders.
In 2015, members of CCF’s Medical, Clinical Science, and Basic Science Advisory Boards formed a global consortium of research groups, the International Cholangiocarcinoma Research Network (ICRN), that are working in concert to improve knowledge about cholangiocarcinoma etiology, prevention, early detection, treatment and prognosis with an expectation to accelerate scientific and medical progress on an international level, expedite delivery of innovative care and treatments, and improve health outcomes for patients affected by cholangiocarcinoma.
CCF’s Research Fellowship Program was established in 2015 with the goal to raise awareness about cholangiocarcinoma and inspire innovative, quality research. To date, $400,000 has been awarded to provide critical seed funding for eight physician-scientists at the beginning of their careers. In addition, CCF has funded four Conquer Cancer Young Investigator Awards totaling $240,000, resulting in a publication in Nature Magazine.
Each year, CCF hosts an Annual Conference. In 2016, nearly 200 attendees (including 65 physicians from 60 institutions, in 6 countries) represented academia, healthcare, industry, patient advocacy organizations, patients, caregivers and supporters shared best practices, discussed cutting-edge research findings, expanded current partnerships across and within institutions, and forged new alliances throughout the entire cholangiocarcinoma community.
CCF provides direct support services to patients and caregivers. The robust discussion board on the cholangiocarcinoma.org website has received over 100,000 posts to date on topics ranging from clinical trials to grief support and more. Patient advocacy representatives are available in English and Spanish to assist individuals in locating financial resources, nearby medical centers, and information regarding symptoms, diagnosis and treatment. CCF has published a 136-page book “100 Questions and Answers About Biliary Cancer”, and offers a tri-fold brochure in four languages, English, Spanish, Japanese and Chinese.
The Cholangiocarcinoma Foundation is proud to be a partner in coordinating the first World Cholangiocarcinoma Day, held on February 17, 2016. In 2017, CCF served as the lead organizer of this global collaborative initiative to create awareness of both symptoms and treatments.
As a 501(c)(3) public charity, with a Platinum Guidestar rating, over $2.4 million has been raised from donations since the organization’s founding. CCF is virtually based, with no physical office space, and staff, board and advisors reside throughout the United States and beyond. The organization currently receives nearly 300,000 hits on its website annually, and has more than 10,000 followers on Facebook. More than 90 webinars and videos have been posted on the CCF YouTube and Vimeo channels.
When you give, you make a real difference in the lives of our students for years to come.