10th Annual Cholangiocarcinoma Foundation Conference: International Collaboration, Patient Connections, Industry Updates

The Cholangiocarcinoma Foundation (CCF) hosted its 10th annual conference in Salt Lake City from April 12 to 14. This year, approximately 1000 attendees participated—500 in person and 500 virtually.

The event provided networking activities for cholangiocarcinoma patients and caregivers to interact and connect with others experiencing the disease. CCF provides a mentoring program for patients and caregivers called CholangioConnect, and the conference provided time for volunteers to learn more about offering support and for mentors and mentees to spend time together. Patients learned important information on topics such as nutrition, self-care, and treatment options.

“One of the unique aspects of our conferences has been the time investigators and clinicians spend with patients,” said Stacie Lindsey, CCF’s founder and CEO. “Experts who attend say that they do so because of the chance to interact with other researchers and get face-to-face time with patients and caregivers. The conversations help shape care, research, and how we approach this disease overall.”

The scientific meeting was hosted by conference chairs Chiara Branconi, MD, PhD, a Lord Kelvin Adam Smith Reader at the University of Glasgow and a medical oncologist with Beatson Cancer Centre; and Laura Goff, MD, MSCI, MMHC, medical director of the Vanderbilt-Ingram Cancer Center’s Hematology and Oncology Division. The focus was on emerging research and new, innovative therapies that improve patient outcomes.

“This is the most unique conference,” said Flavio Rocha, MD, Oregon Health and Science University’s professor of surgery and Hedinger Chair in the Division of Surgical Oncology, School of Medicine. “It brings together the clinical and scientific experts, young investigators, and trainees to collaborate and directly update patients and caregivers.”

In addition to presenting research fellowships, poster awards, and recognizing volunteers, Lindsey announced the foundation’s first-ever Chief Medical Officer, Juan Valle, MD, MB ChB, MSc.

This is the most unique conference... It brings together the clinical and scientific experts, young investigators, and trainees to collaborate and directly update patients and caregivers.

—Flavio Rocha, MD

Dr Valle begins his new position in August 2023. He has dedicated his career to improving the lives of patients with cancer and advancing the understanding of this complex disease. He is an oncologist and professor in medical oncology at the Christie NHS Foundation Trust and the University of Manchester and a member of the foundation’s Scientific & Medical Advisory Board. His research focuses on developing new therapies for pancreatic, biliary, and neuroendocrine cancers, and he has been instrumental in designing and developing clinical trials.

CCF is collaborating with the Mayo Clinic on a study of genetic variations associated with cholangiocarcinoma through the Genome-Wide Association Study. At the conference, 148 participants (those with and without the disease) provided blood samples to help researchers develop better prevention, diagnosis, and treatment strategies.

Caregivers and patients participated in the Engaging Patients in Cholangiocarcinoma forum, helping shape understanding and the treatment of the disease. The discussions aimed to help patients and caregivers develop new communication with disease experts and further advocate for themselves. Patients and their caregivers also participated in Industry Council Sessions in which they spoke directly with pharmaceutical companies to help inform future clinical trials and outreach.

“I lost my father to this disease and certainly did not want anyone else to lose their loved ones to it,” said CCF volunteer Ambuj Srivastava. “Getting the chance to play a role in helping improve treatments for future patients means a lot to me and my father’s legacy. I’m grateful for the deep collaboration between experts, patients, and caregivers.”

Attendees also participated in a volunteer service project, assembling 2500 care kits for newly diagnosed patients. The kits included comfort items, resource materials, and handwritten notes. The kits will be mailed out throughout the year.

CCF will host the 11th Annual Cholangiocarcinoma Foundation Conference on April 17 to 19, 2024, in Salt Lake City, UT. For more information, visit curecca.org.