The Lynx Group
Cholangiocarcinoma News

CCF Corner

September 2022, Vol 3, No 3 — September 28, 2022
The Cholangiocarcinoma Foundation hosts a patient registry, the International Cholangiocarcinoma Patient Registry (ICPR), that is a global database comprising patient medical histories and treatments for cholangiocarcinoma (CCA).
Read More

June/July 2022, Vol 3, No 2 — August 18, 2022
There is a desperate need for patients with CCA to gain access to clinical trials to help improve survival.
Read More

March 2022, Vol 3, No 1 — March 29, 2022
At the 2022 Cholangiocarcinoma Foundation (CCF) Annual Conference on February 22-25, Melinda Bachini, Director of Advocacy of CCF, provided an update about the foundation’s advocacy and patient support initiatives. The goal of the CCF’s advocacy group is to provide educational and emotional support for the cholangiocarcinoma (CCA) community of patients and caregivers, and to empower them with the knowledge and guidance needed to self-advocate.
Read More

December 2021, Vol 2, No 4 — January 5, 2022
In 2015, the Cholangiocarcinoma Foundation (CCF) launched the International Cholangiocarcinoma Research Network (ICRN). This network is a global collaborative of clinicians, researchers, and scientists from leading academic medical centers and research institutions working together to improve the prevention, early detection, treatment, and prognosis of cholangiocarcinoma (CCA).
Read More

December 2021, Vol 2, No 4 — January 5, 2022
The Cholangiocarcinoma Foundation (CCF) is encouraging healthcare professionals to support the adoption of the new International Classification of Diseases, 11th Revision (ICD-11), and its role in creating more robust epidemiological data for cholangio­carcinoma (CCA).
Read More

I believe that the most powerful and positive force in medicine is that of a self-advocating patient. At the Cholangiocarcinoma Foundation, we strive to connect, educate, and empower patients with cholangiocarcinoma (CCA) to partner with their care team in navigating the course of their treatment. However, we understand that the treatment options are extremely limited for many patients with CCA.
Read More

June/July 2021, Vol 2, No 2 — July 28, 2021
In an article published last year in CCA News, I shared the Cholangiocarcinoma Foundation (CCF)’s philosophy on taking risks and leveraging collaboration over competition. The CCF was nearing its 15th anniversary, and the FDA had recently approved pemigatinib (Pemazyre), the first targeted therapy approved for cholangiocarcinoma (CCA).
Read More

March 2021, Vol 2, No 1 — April 13, 2021
I first learned of cholangiocarcinoma (CCA) in 2015, when my husband Steve was diagnosed with stage IV inoperable intrahepatic CCA and was given a prognosis of less than a year to live. He defied the prognosis and survived for 40 months, until his death in March 2019. When he was diagnosed, neither one of us had ever heard the word “cholangiocarcinoma” and did not know it was possible to have cancer in the bile duct. We both knew that a diagnosis of other gastrointestinal (GI) cancers, such as pancreatic or colon cancer, could be catastrophic and were stunned to realize that the treatment options and outcomes for patients with CCA were the most dismal of all GI cancers.
Read More

December 2020, Vol 1, No 3 — January 5, 2021
“You have cancer.” These are the 3 little words that everyone dreads hearing and that doctors wish they never had to utter. Yet according to the American Cancer Society, an estimated 1.8 million people will be diagnosed with cancer in the United States this year, and more than 600,000 people will die of it.
Read More

October 2020, Vol 1, No 2 — October 29, 2020
In the past decade, there has been a sea change in awareness about cholangiocarcinoma (CCA). However, the standard of care has remained unchanged for more than 10 years. This year, the FDA approved a new targeted therapy, pemigatinib, which became a treatment option for approximately 10% to 15% of patients with CCA. The process of drug discovery, as well as changes in the standard of care, are becoming increasingly reliant on collaborative approaches that leverage the expertise and resources of a wide range of partners to strengthen the tools and knowledge that advance the research objectives of all stakeholders.
Read More

Page 1 of 2


Subscribe Today!

To sign up for our newsletter or print publications, please enter your contact information below.

I'd like to receive: