The 9th Annual Cholangiocarcinoma Foundation Conference begins on Wednesday, Feb. 23rd, and takes place at the Salt Palace Convention Center. The three-day conference is presented by the nonprofit Cholangiocarcinoma Foundation and is also offered virtually. Attendees and presenters from around the world represent healthcare, industry, advocacy organizations, patients, caregivers, academia and regulatory bodies. Registration is open now.
“The conference brings together a multi-disciplinary group of experts from around the world to present and exchange scientific ideas and proposals relating to the complex landscape of cholangiocarcinoma (CCA). Global collaboration and high-quality research are hallmarks of the conference,” said Foundation CEO and Founder Stacie C. Lindsey. “A scientific conference that gives patients a seat at the table is the kind of inclusive, collaborative effort that makes this community unique. We are looking forward to a great conference.”
The Foundation is the leading global resource for CCA, a rare but deadly bile duct cancer. It strives to improve methods for early detection, advance treatment options and improve quality of life and survival for CCA patients. The conference is the premier source for the presentation of cutting-edge research, innovative therapies, and patient education. In 2021, more than 1,600 participants from 50 states and 52 countries - 700 patients and caregivers, 300 clinicians and researchers, and 400 industry representatives and sponsors - participated in the virtual conference.
“The Cholangiocarcinoma Foundation has helped me make connections with other patients while learning about the ever-changing direction of this disease. The Foundation has brought hope to a wide range of people from all over the world who are fighting their own battle, researching to find a cure or caring for someone who is facing the battle of their life,” said Deborah Kilmer, a CCA survivor.
Distinguished co-chairs of the conference are Jesper Andersen, PhD of the University of Copenhagen in Denmark, and Lipika Goyal, MD, MPhil of Massachusetts General Hospital Cancer Center. They are also among the 56 speakers who are presenting in designated sessions throughout the conference focused on basic, translational and clinical research, including new data on an immunotherapy option for patients. Forty poster presentations disseminating important research findings are also highlighted at the conference.
Additionally, the Foundation is honoring three individuals with its distinguished Mark R. Clements Award for volunteerism, community impact and vision, innovation, and collaboration. Mark R. Clements is the brainchild of the Foundation. He passed away from the disease in January 2006. His sister, Stacie C. Lindsey, and other family members carried out Mark’s wishes and founded the 501(c)(3) that is now moving into its 16th year in existence.
“The Mark R. Clements Awards are the highest honor awarded by the Foundation each year. As a cholangiocarcinoma patient himself, Mark Clements was truly the inspiration and driving force around the creation of this Foundation,” said Lindsey. “Before Mark passed, his wish was to create something that could help others have the kind of support he did. This award reflects the umbrella of hope that covers this community.”
As part of the conference, the sky bridge at City Creek Center in downtown Salt Lake City will be illuminated in green, which is the official color of cholangiocarcinoma. The Foundation works with volunteers around the world to feature green lighting in buildings, homes, hospitals, towers, and bridges to raise awareness about the estimated 10,000 people in the United States who are diagnosed with CCA each year and tens of thousands more worldwide.
However, the incidence of the rare cancer is growing. A recent study (JAMA Network Open) estimates that by 2040, liver and bile duct cancer will be the third deadliest cancer in the United States. To advocate for much-needed funding and promote education about the disease, February is designated as Cholangiocarcinoma Awareness Month. During this month, the Foundation sponsors a campaign called, “Light it Green for CCA” to raise awareness and encourage participation in World Cholangiocarcinoma Day - Feb. 12th.
Additionally, the campaign honors those who have passed away from the disease, celebrates patients and survivors, and solicits donations for cholangiocarcinoma-specific research. A series of educational videos, photos and graphics are also shared during the month. This campaign is accompanied by advocacy with a Light it Green for CCA Walk the evening of the first day - Patients Day - of the conference. This walk takes place in downtown Salt Lake City with an estimated 200 participants wearing glow-in-the-dark attire and carrying green lanterns to symbolize hope for a cure.
On the final day of the conference, Feb. 25th, volunteers are putting together 1,500 care kits for newly diagnosed CCA patients throughout the US. These free kits can be requested through Newly Diagnosed/New to CCF. The kits include carrying bags, water bottles, blankets, sunglasses, hand sanitizer, chapstick, notepads, pens, among other comforts hand-selected by patients themselves.
Media is invited to participate in the conference and cover the sessions, Light it Green for CCA Walk on Feb. 23rd, 7 p.m., and care kit assembly on Feb. 25th, 9:30 a.m. to 12:30 p.m. Contact the Utah-based Foundation for a registration code that allows media to virtually attend online for free.
“The Cholangiocarcinoma Foundation has helped me make connections with other patients while learning about the ever-changing direction of this disease. The Foundation has brought hope to a wide range of people from all over the world who are fighting their own battle, researching to find a cure or caring for someone who is facing the battle of their life.”