Salt Lake City, US
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Founded in 2006 in Salt Lake City, CCF is the only organization in North America exclusively dedicated to finding a cure and improving the quality of life for those affected by cholangiocarcinoma (bile duct cancer). Approximately 6,000 people in the United States are diagnosed each year with this hard-to-diagnose, difficult-to-treat, fatal type of cancer.
Cholangiocarcinoma is a rare form of cancer that originates from the cells lining the bile ducts. Almost 2 out of 3 people with bile duct cancer are 65 or older when it is found. However, people of nearly any age can be diagnosed. Risk factors may include exposure to chemicals such as asbestos, a history of smoking, or infections or inflammation from conditions such as hepatitis or ulcerative colitis. However, many cases also occur spontaneously where the cause of cholangiocarcinoma is not known, and this is reflected in the increase of many young people who are now being diagnosed. Relatively little is known about the possibility of genetic inheritance of cholangiocarcinoma or other biliary cancers.
Patients with cholangiocarcinoma 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 this malignancy are diagnosed when the cancer is far too advanced to be removed by surgery. Only about 20 percent of bile duct cancers are found at the stage when the tumor can be removed. In more advanced cases when surgery is not an option, chemotherapy with or without radiation therapy is the mainstay of treatment and may be effective in managing the spread and size of the tumor to extend life for several months or years. Despite these treatments, most people diagnosed with advanced bile duct cancer have less than a 10 percent chance of surviving at least five years.
In addition to funding research, and creating and hosting the International Cholangiocarcinoma Patient Registry, CCF provides a variety of supportive services for patients and caregivers. In February 2016, we hosted our 3rd Annual Conference at the University of Utah Conference Center, with nearly 200 attendees. The Annual Conference provides a forum to continue to enhance knowledge about cholangiocarcinoma across the entire disease spectrum from bench-to-bedside and offers programming that promotes collaboration, advances research efforts, and provides cutting-edge information to all stakeholders, including members of the scientific and medical communities, academia, policymakers and regulators, industry, advocates and patients/caregivers.
In other efforts to educate the patient and caregiver communities, the Foundation has published a 136-page digital book titled “100 Questions and Answers About Biliary Cancer” that is offered free upon request. Additional publications include a tri-fold brochure about cholangiocarcinoma published in four languages: English, Chinese, Japanese and Spanish and a double-sided one-page fact-sheet in English that can be used as a handout or poster.
During 2015, CCF’s website at www.cholangiocarcinoma.org received nearly 260,000 hits. The website provides a wide variety of services to patients and family members including a patient-authored blog, a robust internet discussion board, e-publications, and other information to help patients, families and medical professionals learn about diagnosis, current treatments, the latest research and third party resources. The website also connects users to the organization’s social media pages including Facebook (9,800 likes), Twitter (1,000 followers), Instagram (1,000 followers), Linkedin (250 followers), Vimeo and YouTube. CCF has posted 60 webinars on its video sharing sites.
As a lethal disease with increasing global incidence, cholangiocarcinoma lacks sufficient attention and resources. There is clearly a vast unmet need for support and education for patients and their families experiencing a diagnosis of bile duct cancer in the United States and beyond.
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