CHOLANGIOCARCINOMA FOUNDATION
Strength in Community, Hope in Research
CHOLANGIOCARCINOMA FOUNDATION
EIN: 20-5776861
as of November 2025
as of November 14, 2025
Mission
The Cholangiocarcinoma Foundation is a global 501(c)(3) nonprofit that's mission is to find a cure and improve the quality of life for cholangiocarcinoma (bile duct cancer) patients. The Foundation supports basic and translational research and raises awareness about the rare cancer through fundraising, advocacy, collaboration, and education. Additional services include a newly connected program, an annual conference, complimentary publications in four languages (English, Spanish, Japanese and Chinese), a free online book "100 Questions and Answers About Biliary Cancer,” an informational website (cholangiocarcinoma.org), a patient registry, and phone/email support.
Ruling year
2007
CEO
Mrs. Stacie Lindsey
Main address
5965 W. Fragrant Lane
Herriman, UT 84096 USA
EIN
20-5776861
Diseases and conditions
Population served
People with diseases and illnesses
NTEE code
Cancer Research (H30)
Alliance/Advocacy Organizations (G01)
Cancer (G30)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Programs and results
Reports and documents
Download annual reportsWhat we aim to solve
Cholangiocarcinoma is a rare, aggressive and deadly form of cancer that originates from the cells lining the bile duct and affects approximately 10,000 Americans annually. Almost 2 out of 3 people with bile duct cancer are 65 or older when it is found. However, people of any age can be diagnosed, and the incidence and mortality of cholangiocarcinoma in North America and Europe has increased dramatically in the past three decades, but it is not known why. Risk factors may include exposure to chemicals such as asbestos, a history of smoking, infections or inflammation from conditions such as hepatitis or ulcerative colitis. However, many cases also occur spontaneously and relatively little is known about the possibility of genetic inheritance in this type of cancer.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
International Cholangiocarcinoma Patient Registry
The International Cholangiocarcinoma Patient Registry (ICPR) unites patients and the global research community. By contributing your health records, you become a part of research initiatives, hastening progress in the fight against cholangiocarcinoma. Personally identifiable information is removed, and the medical data is used to better understand cholangiocarcinoma, benefiting those living with it today and continuing to develop targeted diagnostics and treatments.
As a unified community, we provide hope in research, driving significant advancements in understanding and treating this disease. Join more than 2,000 individuals affected by cholangiocarcinoma in this pivotal mission and experience the strength found in a shared community.
Citizen Health is our trusted partner in this initiative. This partnership and patient collaboration are central to our community-powered research.
Research Grants
CCF has awarded 60 Research Fellowship research grants totaling 3.01 million dollars since 2015. These funds are helping researchers at institutions across the globe collaborate and better understand the complexity of the disease and accelerate the pace of finding a cure. We are excited about the progress in this area and look forward to better patient outcomes. Learn more about each grant and scientist at: https://cholangiocarcinoma.org/fellowship-program/.
100 Questions and Answers about Biliary Cancer
Free online book available upon request.
Website and Social Media
The Cholangiocarcinoma Foundation's website receives approximately 520,000 hits annually from visitors worldwide, and our social media pages have over 40,000 followers combined.
Discussion Boards for Patients and Caregivers
Nearly 100,000 messages on 13,461 different topics have been posted on our website discussion board since our founding. Topics include What's Working, Chemotherapy, Radiation, Surgery, Pain Management, Alternative Treatments, Insurance, Hospitals, Clinical Trials, Palliative Care, Grief Management, and other areas of interest.
Annual Conference
The Foundation is the leading global resource for CCA, a rare but deadly bile duct cancer. It strives to improve methods for early detection, advance treatment options and improve quality of life and survival for patients with cholangiocarcinoma. The Cholangiocarcinoma Foundation Annual Conference is the premier source for the presentation of cutting-edge research, innovative therapies, and patient education. Learn more at: https://cholangiocarcinoma.org/annual-conference/.
Webinars and Educational Videos
70+ educational webinars have been hosted live and posted for enduring viewing on YouTube.
Tri-Fold Publication Available in Four Languages
An educational tri-fold brochure about cholangiocarcinoma is available in English, Spanish, Japanese and Chinese.
International Cholangiocarcinoma Research Network (ICRN)
The ICRN is a global collaboration of research groups from renowned institutions who are working in concert to improve knowledge about cholangiocarcinoma etiology, prevention, early detection, treatment, and prognosis. The network is comprised of highly talented individuals from a spectrum of disciplines, perspectives, and research methods who share a passion to make significant scientific advances to improve outcomes for patients with cholangiocarcinoma.
Learn more at https://cholangiocarcinoma.org/icrn-mission/.
Educational Initiative / Biomarkers Matter
CCF launched a global education initiative for patients and healthcare professionals to learn about the importance of molecular profiling and biomarker testing that may improve treatment options and provide hope for improved outcomes. Learn more at: https://cholangiocarcinoma.org/biomarkers-videos/
Where we work
-
Asia
-
Australia
-
Europe
-
North America
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of unique website visitors
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
Website and Social Media
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Context Notes
Website hits
Number of research studies conducted
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
Research Grants
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
For more information, please visit: https://cholangiocarcinoma.org/professionals/our-grants/
Number of participants attending course/session/workshop
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
Annual Conference
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Annual Conference Attendance
Goals & Strategy
Reports and documents
Download strategic planLearn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
1) Support cholangiocarcinoma patients and caregivers;
2) Fund Academic Research Fellowships;
3) Facilitate collaborative efforts of the International Cholangiocarcinoma Research Network;
4) Increase attendance at our annual conference for patients and medical professionals;
5) Enhance volunteer training to support patient and caregiver education programs;
6) Sponsor campaigns that spread awareness and raises funds.
What are the organization's key strategies for making this happen?
1) Annual Call for applications and subsequent review by medical advisors;
2) Recruiting international members through networking, initiating clinical trials in collaboration with biotech and pharmaceutical industry to accelerate treatment options;
3) Build mailing lists to market event; promote via email, website and social media; press releases;
4) Launch CARE (Cholangiocarcinoma Advocacy Research Education) initiative to train volunteers to serve as discussion board moderators, speaker's bureau presenters, CholangioConnect mentors, and public policy advocates.
What are the organization's capabilities for doing this?
As we enter our next decade of service, the Cholangiocarcinoma Foundation is well-equipped to manage this growth. Our budget has increased from $561,000 in 2014 to over $4.5M in 2021. Increasing partnerships with industry, collaborations with like-minded non-profits and healthcare organizations, and the generous continuing support of many individual long-term and major donors have provided us with the resources necessary to expand our efforts and further serve those with bile duct cancer.
What have they accomplished so far and what's next?
After 16 years, we remain the only nonprofit organization in North America exclusively dedicated to finding a cure and supporting patients and caregivers impacted by cholangiocarcinoma. This in itself is an achievement, however, there is significant work yet to be accomplished. We will continue to expand the depth and breadth of the patient and caregiver outreach we offer, the volume of individuals we reach and serve, and the number of research projects we can fund. As long as cholangiocarcinoma still exists, our job is not yet complete.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
-
How is your organization using feedback from the people you serve?
, , ,
-
Which of the following feedback practices does your organization routinely carry out?
-
What challenges does the organization face when collecting feedback?
Financials
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2024 info
3.42
Months of cash in 2024 info
7.4
Fringe rate in 2024 info
15%
Funding sources info
Assets & liabilities info
Financial data
CHOLANGIOCARCINOMA FOUNDATION
Balance sheetFiscal Year: Jul 01 - Jun 30
The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.
Fiscal Year: Jul 01 - Jun 30
This snapshot of CHOLANGIOCARCINOMA FOUNDATION’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.
Created in partnership with
Business model indicators
| Profitability info | 2020 | 2021 | 2022 | 2023 | 2024 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | $180,525 | $689,101 | $758,043 | $1,107,378 | $225,354 |
| As % of expenses | 10.1% | 30.3% | 21.0% | 21.1% | 3.6% |
| Unrestricted surplus (deficit) after depreciation | $177,026 | $683,664 | $749,118 | $1,093,027 | $188,977 |
| As % of expenses | 9.9% | 30.0% | 20.7% | 20.8% | 3.0% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $1,887,741 | $3,901,961 | $4,935,665 | $5,082,650 | $6,918,626 |
| Total revenue, % change over prior year | -14.6% | 106.7% | 26.5% | 3.0% | 36.1% |
| Program services revenue | 0.0% | 1.0% | 2.9% | 1.2% | 9.3% |
| Membership dues | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Investment income | 0.2% | 0.0% | 0.0% | 1.7% | 2.5% |
| Government grants | 0.8% | 3.6% | 4.2% | 0.0% | 0.0% |
| All other grants and contributions | 99.1% | 94.5% | 92.6% | 96.1% | 88.7% |
| Other revenue | 0.0% | 0.8% | 0.3% | 1.0% | -0.5% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $1,778,808 | $2,273,985 | $3,611,527 | $5,251,676 | $6,201,547 |
| Total expenses, % change over prior year | -7.9% | 27.8% | 58.8% | 45.4% | 18.1% |
| Personnel | 56.7% | 53.9% | 43.7% | 39.9% | 48.3% |
| Professional fees | 11.6% | 12.5% | 11.7% | 14.3% | 10.7% |
| Occupancy | 0.3% | 0.8% | 0.9% | 0.6% | 0.3% |
| Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 10.9% | 15.4% | 16.6% | 19.0% | 16.3% |
| All other expenses | 20.6% | 17.4% | 27.1% | 26.2% | 24.3% |
| Full cost components (estimated) info | 2020 | 2021 | 2022 | 2023 | 2024 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $1,782,307 | $2,279,422 | $3,620,452 | $5,266,027 | $6,237,924 |
| One month of savings | $148,234 | $189,499 | $300,961 | $437,640 | $516,796 |
| Debt principal payment | $0 | $0 | $207,950 | $0 | $0 |
| Fixed asset additions | $9,305 | $11,688 | $0 | $28,450 | $96,732 |
| Total full costs (estimated) | $1,939,846 | $2,480,609 | $4,129,363 | $5,732,117 | $6,851,452 |
Capital structure indicators
| Liquidity info | 2020 | 2021 | 2022 | 2023 | 2024 |
|---|---|---|---|---|---|
| Months of cash | 7.4 | 13.5 | 12.0 | 7.6 | 7.4 |
| Months of cash and investments | 7.4 | 13.5 | 12.0 | 9.4 | 9.9 |
| Months of estimated liquid unrestricted net assets | 5.0 | 7.4 | 7.2 | 7.4 | 6.5 |
| Balance sheet composition info | 2020 | 2021 | 2022 | 2023 | 2024 |
|---|---|---|---|---|---|
| Cash | $1,095,863 | $2,559,161 | $3,617,386 | $3,336,094 | $3,835,181 |
| Investments | $1,108 | $0 | $0 | $771,137 | $1,260,098 |
| Receivables | $56,795 | $45,705 | $195,952 | $191,033 | $464,325 |
| Gross land, buildings, equipment (LBE) | $23,369 | $33,323 | $36,264 | $64,714 | $139,355 |
| Accumulated depreciation (as a % of LBE) | 35.4% | 35.9% | 49.4% | 49.9% | 33.4% |
| Liabilities (as a % of assets) | 33.2% | 11.2% | 6.6% | 21.5% | 25.0% |
| Unrestricted net assets | $749,368 | $1,433,032 | $2,182,150 | $3,275,177 | $3,464,154 |
| Temporarily restricted net assets | N/A | N/A | N/A | N/A | N/A |
| Permanently restricted net assets | N/A | N/A | N/A | N/A | N/A |
| Total restricted net assets | $65,658 | $1,004,533 | $1,570,628 | $355,574 | $1,018,631 |
| Total net assets | $815,026 | $2,437,565 | $3,752,778 | $3,630,751 | $4,482,785 |
Key data checks
| Key data checks info | 2020 | 2021 | 2022 | 2023 | 2024 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
CEO
Mrs. Stacie Lindsey
Stacie Lindsey is a founding member of the Cholangiocarcinoma Foundation and has served on the board of directors since its inception in 2006, and as President and CEO since 2014. She also serves on the steering committee of the Global Cholangiocarcinoma Alliance, the Program Steering Committee of the Cholangiocarcinoma Summit, and is a founding member of the organizing committee of the Asia Pacific Cholangiocarcinoma Conference. Furthermore, she is a patient advocate on both the Mayo Clinic Hepatobiliary SPORE and the Massachusetts General Hospital Hepatobiliary SPORE and serves as an executive committee member of the GI Cancers Alliance.
Stacie serves as a founding member of the International Cholangiocarcinoma Research Network (ICRN). Under Stacie's leadership, ICRN has become a global consortium of researchers from more than 85 leading institutions working in concert to improve knowledge about cholangiocarcinoma etiology, prevention, and early detection.
Number of employees
Source: IRS Form 990
CHOLANGIOCARCINOMA FOUNDATION
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
CHOLANGIOCARCINOMA FOUNDATION
Highest paid employeesSOURCE: IRS Form 990
Compensation data
CHOLANGIOCARCINOMA FOUNDATION
Board of directorsas of 07/08/2024
Board of directors data
Mrs. Teresa Delcorso-Ellmann
Board Chair, Cholangiocarcinoma Foundation
Bruce Coppock
Jason Scott
Founder, JS Consulting
Bruce Coppock
Retired, St. Paul Chamber Orchestra
Dan Blum
Managing Member, Glenhaven Capital
Ross Green
Investment Professional, NY Based Asset Manager
Patrica Maxin
Program Manager, Cholangio Connect
Teresa M. Delcorso-Ellmann
Assisant Dean, Rugters - the State University of New Jersey
Jack Calloway
Financial services executive with 30+ years of Wall Street
Dean Meyer
Chief Information Officer of the Chemours Company
Robert Russell
Aviation professional based in Dublin, Ireland
Liz Warner
Vice President at Iron Park Capital
Jason Scott
Managing Director of the Retiree Research Center at Financial Engines
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
-
Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
Disability
Contractors
Fiscal year endingProfessional fundraisers
Fiscal year endingSOURCE: IRS Form 990 Schedule G
Solicitation activities
GuideStar Pro Reports
Report successfully added to your cart!
Want more data?
A GuideStar Pro report containing the following information is available for this organization:
- Email contact information
- Financial trends metrics for five most recent years 2024, 2023, 2022, 2021, 2020*
- Financial statements for 2022, 2021, 2020, 2016, 2015
- Letter of Determination
- Officer and/or Employee data for 2024, 2023, 2022, 2021, 2020
- Contractor and/or Paid Preparer data for 2024, 2023, 2022
- Board of Directors data for 2024
- *with the ability to download the data for 2024, 2023, 2022, 2021, 2020
Download it now for $125.
Need the ability to download nonprofit data and more advanced search options?Consider a Pro Search subscription.