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Patient-Centered Outcomes Research Institute Awards $50,000 to the Cholangiocarcinoma Foundation for Upcoming Conference

Rare Cancer Organization receives PCORI funding 3 years in a row

Our goal is that these interactions between patients and researchers will improve quality of life and stimulate interest in the research community to work together to find new treatments and a cure.”
— Donna Mayer, CCF Executive Director

SALT LAKE CITY, UT, USA, January 12, 2018 / -- The Cholangiocarcinoma Foundation (CCF) has been approved for its third Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI) to support patient engagement in the 2018 Annual Conference on January 31-February 2 in Salt Lake City. Forty presenters from 6 countries will join an audience of 350 researchers, physicians, nurses, patients, caregivers, and others invested in cholangiocarcinoma (bile duct cancer), a rare but fatal disease.

The program seeks to develop sustainable participation of the medical and scientific communities by presenting current data on basic, translational and clinical research and increasing the knowledge of attendees about key issues central to the prevention, diagnosis, treatment, and cure for cholangiocarcinoma.

Because patients living with cholangiocarcinoma have a direct stake in their own medical care and are in a unique position to provide input, CCF has expanded conference programming to address questions and concerns that are important to patients and their families. Those who have experienced this devastating disease firsthand will be invited to learn about cholangiocarcinoma, share their personal experiences, and contribute to future efforts to further cholangiocarcinoma research.

The $50,000 award from PCORI will provide travel scholarships for 27 patients from the USA and 3 patients from abroad. For those who are unable to attend, a live webcast will allow viewers around the world to ask questions and participate in the discussions in real-time during the patient-centered sessions on Wednesday, January 31 from 10:00am-6:00pm (Mountain).

Donna Mayer, CCF Executive Director states “The PCORI support allows CCF to incorporate patient and family participation into our meeting which further allows the medical community to understand the depth and breadth of the patient experience when faced with a devastating diagnosis of cholangiocarcinoma. Our goal is that these interactions will ultimately improve patient quality of life and stimulate interest in the research community to work together to find new treatments and a cure.”

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research to provide patients, caregivers and clinicians with evidence needed to make better-informed healthcare decisions.

About the Cholangiocarcinoma Foundation
CCF is a global 501(c) (3) non-profit organization whose mission is to find a cure and improve the quality of life for those affected by bile duct cancer through advocacy, education, collaboration and research. Visit to learn more.

Jordan Giles
Cholangiocarcinoma Foundation
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