The Fibrolamellar Cancer Foundation

04/20/2026

SAVE THE DATE!!!
FCF Patient & Family Gathering
Lake Mansfield Trout Club, Stowe, VT
Sept 18 - Sept 20, 2026

ON LINE REGISTRATION WILL OPEN JULY 1, 2026

04/07/2026

TONIGHT @ 7pm EST / 4pm PT is the FCF Hosted Webinar:

New Clinical Guidelines for Fibrolamellar Carcinoma (FLC) Released 📣
We’re glad to share that a landmark, evidence‑based clinical guideline for fibrolamellar carcinoma (FLC) has been released online ahead of publication in Hepatology. Developed by a panel of 20 expert physicians from 15 leading cancer centers, and supported by FCF, these guidelines are an important step forward for everyone affected by this rare cancer.
Because FLC is biologically different from other liver cancers, treatment decisions have long been confusing and inconsistent. These new guidelines bring together the best available medical evidence and the real‑world experience of doctors who treat many FLC patients, offering a clearer roadmap for diagnosis, treatment options, and supportive care.
The goal is to improve the consistency and quality of care, while empowering patients and caregivers to ask informed questions and actively participate in shared decision‑making with their medical teams. Ultimately, these guidelines aim to accelerate research progress and bring hope for better outcomes.
👉 Join the conversation
FCF is hosting a live Zoom panel discussion featuring several members of the team who authored the guidelines.
📅 Tuesday, April 7
⏰ 7:00 pm ET / 4:00 pm PT
🔗 Visit (https://fibrofoundation.org/new-clinical-guidelines-for.../) to learn more about the guidelines and register for the webinar

04/07/2026

Tomorrow....Tuesday, April 7
Webinar....
Don't forget to sign up!

New Clinical Guidelines for Fibrolamellar Carcinoma (FLC) Released 📣
We’re glad to share that a landmark, evidence‑based clinical guideline for fibrolamellar carcinoma (FLC) has been released online ahead of publication in Hepatology. Developed by a panel of 20 expert physicians from 15 leading cancer centers, and supported by FCF, these guidelines are an important step forward for everyone affected by this rare cancer.
Because FLC is biologically different from other liver cancers, treatment decisions have long been confusing and inconsistent. These new guidelines bring together the best available medical evidence and the real‑world experience of doctors who treat many FLC patients, offering a clearer roadmap for diagnosis, treatment options, and supportive care.
The goal is to improve the consistency and quality of care, while empowering patients and caregivers to ask informed questions and actively participate in shared decision‑making with their medical teams. Ultimately, these guidelines aim to accelerate research progress and bring hope for better outcomes.
👉 Join the conversation
FCF is hosting a live Zoom panel discussion featuring several members of the team who authored the guidelines.
📅 Tuesday, April 7
⏰ 7:00 pm ET / 4:00 pm PT
🔗 Visit (https://fibrofoundation.org/new-clinical-guidelines-for.../) to learn more about the guidelines and register for the webinar

A landmark, evidence‑based clinical guideline for the diagnosis and treatment of fibrolamellar carcinoma (FLC) has been released online ahead of publication i

04/01/2026

📣 New Clinical Guidelines for Fibrolamellar Carcinoma (FLC) Released 📣

We’re glad to share that a landmark, evidence‑based clinical guideline for fibrolamellar carcinoma (FLC) has been released online ahead of publication in Hepatology. Developed by a panel of 20 expert physicians from 15 leading cancer centers, and supported by FCF, these guidelines are an important step forward for everyone affected by this rare cancer.

Because FLC is biologically different from other liver cancers, treatment decisions have long been confusing and inconsistent. These new guidelines bring together the best available medical evidence and the real‑world experience of doctors who treat many FLC patients, offering a clearer roadmap for diagnosis, treatment options, and supportive care.

The goal is to improve the consistency and quality of care, while empowering patients and caregivers to ask informed questions and actively participate in shared decision‑making with their medical teams. Ultimately, these guidelines aim to accelerate research progress and bring hope for better outcomes.

👉 Join the conversation

FCF is hosting a live Zoom panel discussion featuring several members of the team who authored the guidelines.
📅 Tuesday, April 7
⏰ 7:00 pm ET / 4:00 pm PT
🔗 Visit (https://fibrofoundation.org/new-clinical-guidelines-for-flc-published/) to learn more about the guidelines and register for the webinar

A landmark, evidence‑based clinical guideline for the diagnosis and treatment of fibrolamellar carcinoma (FLC) has been released online ahead of publication i

12/01/2025

We’re excited to share that a landmark paper has just been published in Nature Medicine highlighting advances in targeted immunotherapy for fibrolamellar carcinoma (FLC).

The publication, “A Therapeutic Peptide Vaccine for Fibrolamellar Hepatocellular Carcinoma: A Phase 1 Trial,” reports on a novel vaccine treatment designed to train the immune system to recognize and attack FLC tumors. This vaccine targets the abnormal fusion protein found in nearly all FLC cases.

Key Highlights:
✅ The treatment appeared to be safe and well-tolerated
✅ 75% of patients mounted an immune response
✅ All responding patients achieved some disease control
✅ One-third of responding patients experienced dramatic, long-lasting tumor shrinkage—and remain cancer-free 3–5 years later!

This is the first time multiple cases of near-complete, durable responses have been reported in advanced FLC.

We are deeply grateful to the teams at Johns Hopkins University School of Medicine and St. Jude Children’s Research Hospital for their outstanding work, and proud that FCF helped make this clinical trial possible.
https://fibrofoundation.org/groundbreaking-flc-vaccine-study-published-in-nature-medicine/

11/11/2025

Another amazing Pig Gig in New Jersey! Thank you Glenn Alexander for 10 years of fundraising for The Fibrolamellar Cancer Foundation. We are so grateful! 💚💚💚💚

08/01/2025

As summer heats up, so does FCF's commitment to fibrolamellar research. We've launched our 2025 Summer Appeal and invite you to join our effort to develop more effective treatments for fibrolamellar patients.

The Fibrolamellar Cancer Foundation (FCF) is now supporting four groundbreaking clinical trials, an extraordinary milestone for our rare disease community. One of these trials has already saved lives. But advancing this important work is expensive. Each of these clinical trials has required over $1 million of FCF support.
Continuing this progress is only possible with your help. Every donation—large or small—helps us test and deliver innovative new fibrolamellar treatments. And now, through September 10, 2025, Chuck and Marna Davis will match every gift to FCF dollar for dollar.

Please visit https://fibrofoundation.org/giving to make a tax-deductible gift today. As always, 100% of your donation will fund research.

Thank you!

As summer heats up, so does FCF's commitment to fibrolamellar research. We've launched our 2025 Summer Appeal and invite you to join our effort to develop mor

06/19/2025

On June 9 – 11, 2025, FCF hosted its sixth Fibrolamellar Scientific Summit. The goal of this meeting was to bring together the fibrolamellar research community to share knowledge and to collaborate in the search for a cure.

The opening session featured a panel discussion highlighting the latest advancements in targeted immunotherapy for FLC. Titled "Oncogene-Targeted Immune Therapy in FLC", this panel featured two clinician-researchers pioneering clinical trials of therapeutic vaccines aimed at FLC's fusion protein, and a patient currently enrolled in one of those trials.

Specifically, the panelists included:
- Juliane Walz, MD – University of Tübingen,
- Mark Yarchoan, MD – Johns Hopkins University,
- Molly Hones – FLC patient and clinical trial participant, and
- Mark Furth, PhD – Chief Science Officer, FCF (moderator).

You can watch the full discussion on FCF's YouTube channel using the link below:
https://youtu.be/zFAMigwsb-0
https://fibrofoundation.org/panel-discussion-at-2025-fibrolamellar-scientific-summit/

06/18/2025

FCF is pleased to announce that it has awarded a grant to Aleksander Skardal, PhD, of Ohio State University to develop new models of fibrolamellar carcinoma (FLC). A major challenge to researching FLC is the scarcity of lab models that accurately mimic how this cancer behaves in the human body. To address this, the team plans to build three-dimensional mini-tumors that can be used for testing drugs and studying cancer behavior. The approach developed by the Skardal lab has already been used in several other cancers, including some rare ones.

In this effort, the team plans to use FLC tumor samples obtained from the FCF Biobank to:
- grow 3D mini-tumors
- study the cells within these models — including tumor, immune, and support cells
- if necessary, add specific liver-related immune cells to make the models behave more like real FLC in the body.

If successful, this effort will provide a mechanism to study FLC in a more realistic way and to test new treatments — especially immune-based therapies — faster and more reliably.
https://fibrofoundation.org/grant-awarded-to-ohio-state-university/

06/13/2025

The FCF is pleased to announce the funding of a study led by Dr. Sean Ronnekleiv-Kelly of the University of Wisconsin-Madison. This research will explore a key protein, SLC16A14, that is involved in the growth and survival of fibrolamellar cancer (FLC) cells using a new mouse model that the team has developed. Evidence suggests that SLC16A14 is strongly connected to FLC's DNAJB1-PRKACA gene fusion and may be an important link driving the metabolic changes of the cancer cells. This study plans to investigate this possibility with the goal to develop a therapy against SLC16A14 that can eliminate cancer cells that contain the DNAJB1-PRKACA protein (DP) while sparing normal cells.

According to Dr. Ronnekleiv-Kelly, “This funding from the Fibrolamellar Cancer Foundation will be indispensable for allowing us to gain a better understanding of how DNAJB1-PRKACA transforms normal calls into cancer cells. Furthermore, we hope to make significant progress in determining the therapeutic potential of a very promising target (SLC16A14).”
https://fibrofoundation.org/fcf-funds-effort-at-university-of-wisconsin/

06/06/2025

A new clinical trial for fibrolamellar patients is now enrolling patients! The study, "Testing the Addition of an Anti-cancer Drug, DT2216, to the Usual Chemotherapy Treatment for Relapsed or Refractory Solid Tumors and Fibrolamellar Carcinoma" will test the safety, side effects and best dose of DT2216 in combination with the chemotherapy agent, irinotecan. DT2216 is an experimental drug developed by Dialectic Therapeutics, Inc. that is designed to overcome a major mechanism through which cancer cells may resist chemotherapy.

The clinical trial is led by pediatric oncologists Dr. Michael Ortiz (Memorial Sloan Kettering Cancer Center) and Dr. Allison O’Neill (Dana-Farber Cancer Institute). Patients will be able to enroll at multiple hospitals affiliated with the Children’s Oncology Group's Pediatric Early Phase-Clinical Trial Network (PEP-CTN).

The initial Phase 1 portion of this study will enroll in patients between ages 1 and 21 years with solid tumors that have recurred or failed to respond to other treatments. Its main goal will be to determine a recommended Phase 2 dose of DT2216, administered in combination with a standard dose of irinotecan. The Phase 2 portion of the study will be carried out exclusively in FLC patients up to 39 years old. DT2216 will be administered at the recommended dose established in Phase 1, together with irinotecan at its standard dose. The main goal of the Phase 2 portion will be to define anti-tumor activity of the DT2216/irinotecan combination in FLC patients.

FCF is supporting this effort by funding the manufacturing of the DT2216 necessary to conduct the trial. According to John D. Harkey, Jr., Dialectic Therapeutic's Executive Chairman & Co-founder, “We are excited about our partnership with the Fibrolamellar Cancer Foundation which will provide Dialectic the financial backing necessary to allow the clinical testing of this drug in fibrolamellar patients."

FLC patients who are interested in participating should consult their medical oncologist as soon as possible, since enrollment will be limited. More information about the trial is available at clinicaltrials.gov/study/NCT06620302.
https://fibrofoundation.org/dt2216-clinical-trial-now-open/

06/04/2025

From June 9 - 11, FCF is hosting its sixth Fibrolamellar Scientific Summit. The goal of this meeting is to bring together the fibrolamellar research community to share research knowledge and to collaborate in the search for a cure.

To encourage the sharing of unpublished information, the scientific discussions in the main session will be open only to researchers who have signed a multi-party non-disclosure agreement. However, the event’s introductory keynote discussion (June 9, 2025 from 8 – 9 pm ET) will be open for virtual participation by the entire fibrolamellar community – patients, caregivers, clinicians and researchers.

This year's keynote will be a panel discussion exploring the great progress being made in targeted immunotherapy against FLC. It will feature:
- Mark Furth, PhD, FCF (moderator)
- Juliane Walz, MD, University of Tübingen
- Mark Yarchoan, MD, Johns Hopkins University
- Molly Hones, FLC patient and clinical trial participant.

To attend the Zoom webinar, please click on the following link to register: https://us02web.zoom.us/webinar/register/WN_ZR9l28ANSqOZUP2OHTw9Xw #/registration
https://fibrofoundation.org/keynote-discussion-at-fibrolamellar-scientific-summit/