Cholangiocarcinoma Foundation

The Cholangiocarcinoma Foundation (CCF)’s mission is to find a cure and improve the quality of life for those affected by cholangiocarcinoma (CCA). Founded in 2006, in Salt Lake City, UT, by a family member who lost a loved one to cholangiocarcinoma, CCF has grown to become the leading international resource for research, education, and public awareness about the disease.

Cholangiocarcinoma (CCA), also known as bile duct or biliary cancer, is a rare and deadly cancer, with a median life expectancy after diagnosis of 9-12 months and a 5-year survival rates ranging from 30% at best to 2%. CCA is a silent killer because its signs and symptoms most often remain unnoticed until the cancer is in the advanced stage. With ~10,000 people in the United States diagnosed with bile duct cancer each year, the disease is devastating to the patients and families it touches.

CCF began as an online patient discussion board to provide basic information about the disease for newly- diagnosed patients, a service that did not exist in 2006. While the organization's mandate and impact have grown significantly, patient and caregiver advocacy, support and education remain an essential part of the services the Foundation provides. 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 services 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.

As a rare cancer, there has historically been limited funding to support research. As the foundation has grown over the past 10 years, the Foundation’s focus has gravitated toward the funding and stimulation of cutting edge clinical and basic scientific research where they have begun making a significant impact.

The Foundations Board has recently endorsed a strategic plan that calls for a significant increase in the Foundation’s funding capacity; embracing a $25 million campaign to support a range of clinical and basic science research initiatives, capacity building, and program expansion. This comes on the heels of several years of network building with major research institutions throughout the world which has resulted in several important initiatives.

• 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 CCA patient information about the incidence and prevalence of CCA and related disorders.

• In 2015, CCF 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, $1.9 million has been awarded to provide critical seed funding for dozens of physician-scientists at the beginning of their careers. In addition, CCF has also funded four distinguished Conquer Cancer Young Investigator Awards, one resulting in a publication in Nature Magazine.

• Each year, CCF hosts an Annual Conference. In 2019, nearly 500 attendees from 40 states, and 18 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.

• 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 500,000 hits on its website annually and has more than 12,000 followers on Facebook. More than 100 webinars and videos have been posted on the CCF YouTube and Vimeo channels.