Discussing Cholangiocarcinoma and the Foundation- A Must Watch Video!!!

Posted by on Mar 13, 2014 in Uncategorized | 0 comments

We invite you to watch this great video of Heidi Lowitzer and Dr. Renuka Iyer from Roswell Park Cancer Institute discussing Cholangiocarcinoma and the foundation. Many thanks to both of you for spreading awareness and helping educate.


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The Cholangiocarcinoma Foundation- 1st Stakeholder Meeting- A Huge Success

Posted by on Mar 11, 2014 in Uncategorized | 0 comments


The Cholangiocarcinoma Foundation

2014 Stakeholder Meeting ~A Huge Success


The first Cholangiocarcinoma Foundation Stakeholder Meeting was held on the University of Utah campus in Salt Lake City, February 27-28, 2014.  The meeting was held in cooperation with the Hepatobiliary Cancer Research Program at Huntsman Cancer Institute and in collaboration with TargetCancer and The BiliProject Foundation.

Physicians and researchers from across the country and nation listened to lectures and participated in discussions regarding the latest updates, research, current data and treatment options for Cholangiocarcinoma, and the work of the Foundation. The meeting provided collaborative opportunities for all attendees focusing on the following areas:  Profiling and Sequencing, Systemic Therapy, Immunotherapy, Surgery & Transplant, Interventional Radiology, and Registry & Epidemiologic Work.

The following Institutions, Universities and Cancer Centers from across the nation and internationally were represented at the stakeholder meeting:

  • Cleveland Clinic Foundation
  • Columbia University
  • Dana-Farber Cancer Institute
  • Huntsman Cancer Institute, University of Utah
  • Lee Moffitt Cancer Center
  • Massachusetts General Hospital Cancer Center
  • Mayo Clinic
  • MD Anderson Cancer Center
  • Memorial Sloan-Kettering Cancer Center
  • Oregon Health & Science
  • ProMedica Health System
  • 12 de Octubre University Hospital
  • Roswell Park Cancer Institute
  • UCSF
  • University of Hawaii
  • USC Norris Comprehensive Cancer Center
  • UVA
  • Vanderbilt Ingram
  • Virginia Mason Medical Center
  • Yale School of Medicine

Presenters and Topics Included:

  • Ghassan K. Abou-Alfa, MD, Memorial Sloan-Kettering Cancer Center
    • Cholangiocarcinoma Consortium Work Group Strategies
  • Nabeel Bardeesy, PhD, Dana-Farber Cancer Institute
    • Genetic models of Intrahepatic Cholangiocarcinoma
  • Cristina R. Ferrone, MD, Massachusetts General Hospital Cancer Center
    • Immune Response to Cholangiocarcinoma
  • Milind Javle, MD, MD Anderson Cancer Center
    • Molecular Profiling of Cholangiocarcinoma
  • Robin Kim, MD, Huntsman Cancer Institute and University of Utah
    • Liver Transplant Program at Huntsman Cancer Institute for patients with Cholangiocarcinoma
  • Armeen Mahvash MD, MD Anderson Cancer Center
    • Interventional Radiology Therapies for Cholangiocarcinoma
  • Lewis Roberts, MB, ChB, PhD, Mayo Clinic
    • Update on the International Hepatobiliary Neoplasia Registry and the Proposed Genome Wide Associations Study of Cholangiocarcinoma
  • Flavio G. Rocha, MD, FACS, Virginia Mason Medical Center
    • CEACAM 6 as a Biomarker for Cholangiocarcinoma






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100 Questions & Answers About Biliary Cancer eBook Ready for Download

Posted by on Feb 2, 2014 in Uncategorized | 0 comments

Book is Now Available: http://www.cholangiocarcinoma.org/book.htm

You can order  and download your free eBook by completing an online form:  http://cholangiocarcinoma.org/bookorder-ebook.htm




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Barnes-Jewish Hospital Share a Survivor’s Story, A Liver Transplant Recipient

Posted by on Jan 31, 2014 in Uncategorized | 1 comment

Thank you Cathy and Dr. William C Chapman with the Barnes-Jewish Hospital for sharing a  Truly Inspirational video.  Please share this story within your social networks, family, friends, and communities.

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Coming Soon… The CCF Patient Registry – Helping Others, We need your help!

Posted by on Jan 30, 2014 in Uncategorized | 2 comments

We are pleased to announce the upcoming launch of
The Cholangiocarcinoma Foundation (CCF) Patient Registry.

What is a Patient Registry?
A Patient Registry is a secure database of specific and relevant health information entered by participants.

“Creating a registry of patient is the single most valuable action a rare disease community can take. The registry provides critical knowledge which make that disease easier to study, increasing the probability a treatment can be developed.”
–David Meeker; President and CEO of Genzyme
Who can participate?
• a person who has been diagnosed with Cholangiocarcinoma (current patient or survivor)
• a family member (spouse, child, or sibling) who has permission to enter health information about a person who has been diagnosed with Cholangiocarcinoma (including patients who have passed away)

We need your help…
Join The CCF Patient Registry and help extend The Cholangiocarcinoma Foundation’s global reach by creating the only database of patient health information related solely to the diagnosis and treatment of cholangiocarcinoma.

The Mission of The CCF Registry is to assist, accelerate and support research into:
• earlier and more comprehensive diagnosis
• life-extending therapies and treatments
• new clinical and repurposed drug trials
• better symptom and side-effect management
• efforts that ultimately leading to a cure

The Vision of The CCF Registry Database is to collect patient information about the incidence and prevalence of cholangiocarcinoma and related disorders. The CCF Registry will also assist in the screening of appropriate participants for research studies and clinical trials.

What can I do now to prepare?
Gather your health records, test results and information about your family’s health history. Signup here to receive notices and updates about the CCF Patient Registry.

Please contact kim.crittenden@cholangiocarcinoma.org for more information

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Want to Stay Informed?

Posted by on Jan 29, 2014 in Uncategorized | 0 comments

Want to stay informed regarding relevant information regarding Cholangiocarcinoma and the work of the Foundation?  It’s simple, use the link below and supply us with your information and we will keep you informed.


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