Media Kit

Our 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 bile duct cancer, the Cholangiocarcinoma Foundation (CCF) has grown to become a leading resource in research, education, and public awareness across the United States and beyond.

CCF funds research, hosts an international conference and provides supportive services to patients and caregivers.

As a 501(c)(3) public charity, with a Platinum Guidestar rating, CCF is virtually based, with no physical office space, and staff, board and advisors reside throughout the United States and beyond.

This page serves as a one-stop resource for press and media needing information on cholangiocarcinoma. For more information or to schedule an interview, please contact: Donna Mayer, Executive Director, 1 (888) 936-6731 or donna.mayer@cholangiocarcinoma.org


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About the CCF

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 will serve 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 over 250,000 hits on its website annually, and has nearly 10,000 followers on Facebook.  Over 60 webinars and videos have been posted on the CCF YouTube and Vimeo channels. 


Recent Accomplishments

World Cholangiocarcinoma Day

World-CC-Day-Logo-FB1-noyearCCF is proud to be a partner of the first World Cholangiocarcinoma Day, held on February 17, 2016. This is an international effort to raise much-needed awareness of CCA. On February 15, 2017, CCF proudly served as the organizer of this global collaboration.

CCF Annual Conference

CCF has hosted an international conference since 2013. This event brings together all members of the cholangiocarcinoma community to support our mission to find a cure and improve the quality of life for those affected by cholangiocarcinoma.

More on our Annual Conference

The 4th Annual Conference is scheduled for January 31 – February 2, 2018 in Salt Lake City, UT

Cholangiocarcinoma in the Young (CITY)
A collaborative research initiative from Mayo Clinic, MD Anderson, and MGH was created in response to the death of a 12-year-old boy who was the youngest known patient diagnosed with CCA. Members of the Epidemiology Working Group designed this study to better understand why people under the age of 50 are increasingly being diagnosed with CCA, many of whom are teenagers and in their early twenties.
Biliary Emergency Information Card (BEIC)
This initiative was quickly launched 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 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 and carry it in their wallets to give to healthcare providers. The initial idea has been expanded through a collaboration with Boston Scientific to offer the BEIC through a mobile platform.  This initiative was presented to the group by clinicians from Roswell Park Cancer Institute, Lee Moffitt Cancer Center, 12 De Octubre University Hospital, Columbia University, and Oregon Health and Science University
Innovation Grant
A proposal for a multi-center study was awarded to the University of California San Francisco, Memorial Sloan Kettering Cancer Center, and Vanderbilt-Ingram Cancer Center to implement a retrospective study to assess the efficacy of contemporary second-line chemotherapy treatments in order to determine optimal chemotherapy regimens for future patients with advanced disease.
Research Fellowship Program
Launched at the 2015 Annual Conference to raise awareness about CCA and inspire innovative, quality research, the CCF Research Philosophy values studies that involve and catalyze collaborations and promotes open access across the entire research community. To date, $400,000 has provided 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.
International Cholangiocarcinoma Patient Registry (ICPR)
slide7-icprInternational Cholangiocarcinoma Patient Registry (ICPR) – 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.  The goal of the ICPR is to assist, accelerate and support research of bile duct cancer into earlier and more comprehensive diagnosis; life-extending therapies and treatments; new and repurposed drug trials; protocols and medications addressing debilitating treatment side-effects; possible end stage complications; and ultimately efforts leading to a cure. http://cholangiocarcinoma.org/professionals/research/patient-registry/
Patient Education Services
CCF currently receives over 250,000 hits on its website annually, and has approximately 10,000 followers on Facebook. Over 60 webinars and videos have been posted on the CCF YouTube and Vimeo channels.  The robust discussion board on cholangiocarcinoma.org 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.  CCF’s Chief Advocacy Officer is available to directly communicate with patients and caregivers needing phone or email support.

Research Collaborations

Our mission is to accelerate research for early diagnosis, novel therapeutics, personalized oncology, and improved clinical outcomes for patients and our goals are:

  • To develop a resource bank of clinical information and biospecimens from persons having or at risk for hepatobiliary cancers, including family members of patients
  • To create a unique resource to enable future biomarker discovery and validation studies
  • To partner with researchers from other institutions by sharing biospecimens and data for collaborative research efforts which are critical to advancing the field of cholangiocarcinoma
  • To actively enroll fifteen centers into the study by the end of 2015

FolICRN-Finallowing the 2015 CCF Annual Conference, members of CCF’s Medical, Clinical Science, and Basic Science Advisory Boards formed a global consortium of research groups 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 CCA.

The ICRN will support projects that bring together highly talented individuals from a spectrum of disciplines, perspectives, and research methods. The initial partner institutions include: Mayo Clinic, MD Anderson, MGH, MSKCC and UCSF. Institutions from Europe, Asia, and Africa have also joined the initiative to ensure global collaboration. Infrastructure initiated by the International Hepatobiliary Neoplasia Biorepository (IHNB) will set the stage for the collaborative efforts of the ICRN whose primary goals are to: (1) engage global expertise; (2) facilitate multicenter basic, translational, and clinical research; (3) consolidate state of the art information and share network resources (biobanks, databases, etc.); (4) formulate protocols for specific strategic interventions and analysis; (5) mentor the next generation of researchers.
The successful collaborative community fostered by CCF, with multi-disciplinary contributions from Massachusetts General Hospital and University of California San Francisco have led to a new clinical trial for intrahepatic CCA patients.  This is a direct result of work being done at the Bardeesy Lab at MGH to develop and characterize a new mouse model of CCA that can be used both to understand the fundamental mechanisms that cause the disease but also to rapidly test novel potential therapies. These efforts have also resulted in the largest cholangiocarcinoma cell line bank in the world and implemented a collaborative effort to generate more cell lines that have been genetically characterized leading to a better understanding of CCA in humans. Further, these studies have contributed to the knowledge base in various disciplines such as high throughput screening, signal transduction, animal modeling, chemical biology, genome engineering, and both medical and surgical oncology.

Cholangiocarcinoma/Bile Duct Cancer Stats

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Cholangiocarcinoma (CCA) is a rare form of cancer that originates from the cells lining the bile ducts. It is classified as a heterogeneous group of three anatomically distinct cancers grouped according to the location from which they arise: within the bile ducts (intrahepatic), outside the bile ducts (extrahepatic), and in between where the bile ducts exit the liver (perihilar).

The incidence and mortality of CCA in North America and Europe has increased dramatically in the past few decades. In the U.S., there are now between 5,000 and 10,000 new cases diagnosed each year. Rates are highest among Hispanics and Asians, and men appear to have a slightly greater mortality from the disease than women. The highest incidence rates are in Eastern and South-Eastern Asia, with a peak in Thailand.

Patients commonly present with jaundice, abdominal pain, and weight loss. Because these symptoms mimic those of other ailments and there is no validated method of early detection, the majority of patients with CCA are diagnosed when the cancer is far too advanced to be removed by surgery. In these cases, chemotherapy with or without radiation therapy is the mainstay of treatment.

Due to the rising global incidence and mortality rate, combined with a scarcity of information, there is a critical need to develop immediate and sustainable participation of the medical and research communities in the field of CCA.


Photos and Video from our Annual Conference

Footage from our 2016 Annual Conference in Salt Lake City

High resolution logo.


High resolution infographic.


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