Stacie Lindsey’s brother, Mark Clements, was diagnosed with cholangiocarcinoma in 2005. He ultimately died from bile duct cancer on Jan. 19, 2007. Lindsey advocated for her brother, extensively researched treatment options, and began networking with other patients, researchers, and healthcare professionals. From this experience, the Cholangiocarcinoma Foundation was born.

Lindsey is a founding member of the Foundation and has served on the board of directors since its inception. She also serves on the steering committee of the Global Cholangiocarcinoma Alliance, the Program Steering Committee of the Cholangiocarcinoma Summit, and is a founding member of the organizing committee of the Asia Pacific Cholangiocarcinoma Conference. Furthermore, she is a patient advocate on both the Mayo Clinic Hepatobiliary SPORE and the Massachusetts General Hospital Hepatobiliary SPORE and serves as an executive committee member of the GI Cancers Alliance.

Lindsey serves as a founding member of the International Cholangiocarcinoma Research Network. This Network is a global consortium of researchers from more than 85 leading institutions 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.