2013 Annual Report

President’s Message

stacieDear Friends,

Since 2006, the Cholangiocarcinoma Foundation (CCF) has been a support to thousands of patients, caregivers, friends and family members globally. We are pleased to offer you our 2013 annual report, which highlights a few of our accomplishments and ongoing efforts to make a difference in the lives of patients with cholangiocarcinoma.

In 2013, we continued our support of the Mayo Clinic’s International Hepatobiliary Neoplasia Registry, which has proven to be an extensive collaborative effort including the major cancer centers doing research on cholangiocarcinoma. Fifteen centers will be actively enrolling participants into the study by the end of 2015.

The International Cholangiocarcinoma Patient Registry (ICPR) completed a rigorous IRB approval process. Patients, family members and caregivers can enter their information into a secure and private registry on the CCF website, which clinicians, researchers, industry and regulatory entities can use to inform and design research that will assist patients now and in the future.

The book, “100 Questions and Answers About Biliary Cancers” has been a success as 100’s of copies have been distributed and downloaded from the website.

The CCF website has undergone a major overhaul. We’ve added additional medical information, numerous new features and many innovative tools to assist patients and caregivers globally as they navigate this path. Many more exciting and helpful areas will be coming online as the year progresses.

Our culture underscores the value of collaboration and teamwork, and our inclusive and flexible structure supports medical professionals from a variety of disciplines as they develop innovative ideas that move science and understanding forward on a global platform. In order to position us to drive the science and directly impact patient care in an organized and efficient manner, we have reconfigured our Advisory Board. We are grateful to all of our Advisory Board members who have devoted their time and medical expertise to improving the lives of people with cholangiocarcinoma.

The CCF has become the leading education and advocacy organization for cholangiocarcinoma patients. Critical to our continued success is the involvement of our patient, caregiver and volunteer community. We simply could not move forward without the generosity of so many selfless individuals who give of their time, energy and financial resources. My deepest thanks to all of you for helping to make these advancements possible.

Stacie Lindsey
President, The Cholangiocarcinoma Foundation