The Cholangiocarcinoma Foundation (CCF) partnered with Ciitizen to help patients gain free access to their complete health records and a clinical trial finder. Ciitizen also provides them the opportunity to participate in patient-driven research. Ciitizen is a consumer health tech company building a platform that helps patients collect, organize, and share their medical records digitally. The records are converted into a digital and actionable health profile shareable with doctors, family members, and researchers. With this partnership, CCF’s members will immediately get free access to Ciitizen platform. This patient data also enabled Ciitizen to create a one-of-a-kind clinical trial finder, giving our patients better and easier access to clinical trials.

D2 Creative delivers engaging creative campaigns using unique and powerful storytelling techniques that change hearts, minds, and ultimately behavior. D2 Creative has helped CCF produce several patient-friendly videos explaining important topics about cholangiocarcinoma. The growing collection contains Mutations Matter, Understanding your Clinical Trials, Biomarkers Matter, and Learning About Clinical Trials.

Partnering with Komodo Health has assisted CCA patients to access specialists around the country by leveraging their unique intelligence platform, which combines de-identified data from over 500 sources capturing more than 320 million Americans’ healthcare journey. With this data, we are able to connect patients with the best care possible through the CCA specialist map. Komodo Health makes it possible for patients to find the nearest specialist with the most expertise in treating CCA with the click of a button.

One of Cholangiocarcinoma Foundation’s (CCF) main values is patients first in everything we do. The Lynx Group helps CCF reach this goal by improving patients’ and caregivers’ lives through their partnerships with key stakeholders in healthcare. The Lynx Group is a global strategic medical communications and education company. They strive to provide pivotal and contemporary information and education for all stakeholders in healthcare.

CCF partners with Lynx on the Cholangiocarcinoma Summit and the publications CCA News and CONQUERING Cholangiocarcinoma.

If you are interested in requesting a Patient Advisory Board for input on clinical trials, educational materials or other related topics, please contact Melinda Bachini for more information.

The Cholangiocarcinoma Foundation (CCF) appreciates the ongoing commitment, engagement and support of our colleagues in industry who share our passion for addressing the unmet needs of cholangiocarcinoma patients. We are so grateful for the increasing level of interest in this disease among so many companies. In recognition of this robust therapy development environment, CCF is excited to announce our Industry Council (IC), whose purpose is to provide a collaborative forum for ongoing engagement and build stronger partnerships on areas of mutual interest.

Industry Council Benefits:

  • Elevate your company’s profile within the CCA community.
  • Provide input and recommendations on IC meeting topics and related projects.
  • Engage in annual opportunities for the IC to customize a query of the CCF Patient Registry.
  • Engage in annual opportunities for the IC to conduct one patient survey with CCF.
  • Priority access to conducting one educational clinical trial webinar for patients.
  • Opportunity to collaborate with allied companies working in the cholangiocarcinoma space to address community challenges and accomplish mutually beneficial goals and educational materials.
  • Opportunity to participate in planning/promotions for global Cholangiocarcinoma Awareness Day/Month (including working with nonprofit CCA partners).
  • Recognition of IC membership in CCF emails, press release(s), and online channels (including the CCF website).
  • Priority booth selection at Annual Conference
  • Premium time slots for Industry Forum and Patient Advisory Board
  • Quarterly engagement with CCF leadership
  • Learn more about the importance of advocacy

Here are a few projects we are undertaking:

  • Covid-19 effects on our community
  • Develop more patient education videos
  • Growing Patient Registry Data through collaboration with Ciitizen
  • Develop Standardized Informed Consent

Building on Past Successes:

  • FDA meeting
    • Pharmaceutical and biomarker testing companies came together with the objective of streamlining the approval process of CCA therapy
  • Increased number of clinical questions added to Patient Registry.

Join the Industry Council!

For more information, please contact Kaylin Allenbrand at

CCF is committed to helping all patients and caregivers facing cholangiocarcinoma. As part of this commitment, we support organizations worldwide in their efforts to share CCA resources. We invite international advocacy groups to use the resources on this page and any others on our site. Some translations are already available, but we invite you to translate any of these resources to best suit your audiences. For help with formatting your organization’s information on any of the resources you would like to print, please contact

The Biliary Tract Cancer Association (Daisy’s Association)

Cholangiocarcinoma Foundation New Zealand

Cholangiocarcinoma Foundation Australia

UK’s Cholangiocarcinoma Charity

European Cholangiocarcinoma Network

Cholangiocarcinoma Screening and Care Program