Slaying the fibrolamellar beast together

Support Our Fighters

FibroFighters is patient-centric advocacy and education organization dedicated to helping patients and caregivers affected by Fibrolamellar Hepatocellular Carcinoma.

Our ApproachMeet the Team

Explore The Latest News and Events in the Fibrolamellar Community

Check out a recently podcast episode from the Cardiovascular Learning Network featuring Dr. Jordan Tasse.

#OurPromise4Fibro

FibroFighters Foundation does not underestimate the power of accountability and a public promise.  Making these promises to our community is a meaningful way to hold ourselves accountable to reaching foundation goals.

FibroFighters is committed to help every patient and keeping our promises to all who desire our help!

Learn more about the #OurPromise4Fibro campaign below.

Meet Our New Medical Director, Dr. Paul Kent

Dr. Kent has and continues to be instrumental in providing hope and treatments to well over 100 fibrolamellar patients, including those in the collage to the left. 

Since retiring from Rush, FibroFighters was extremely pleased when Paul accepted the position of Consulting Medical Director, bringing his years of experience, devotion, knowledge of FLC, compassion, and desire to collaborate with everyone in the Fibrolamellar universe.  Paul is a fighter and not afraid to think out of the box when standing up and advocating for every Fibro patient and family who reaches out.

xCures

xCures and FibroFighters began to collaborate 18 months ago by enrolling FLC patients into their xINFORM platform. 

Current patients can receive direct benefits while helping the community as a whole learn about current treatments. xCures allows patients to see their entire medical history in one place.

Learn more about the platform and other benefits by clicking the link below.

FibroFighters International Tumor Board

This unique collaboration is led by our Medical Director, Dr. Paul Kent. 

Since launching August 2022, we have discussed dozens of FLC cases in detail among a group of FLC experts and have witnessed a tremendous positive impact on case management.  

To our knowledge this is the only FLC-specific tumor board which invites experts and your medical team to review your case and come to a consensus about the direction of your treatment. 

The Nagourney Cancer Institute

The concept was simple: we have no standard of care for FLC, and doctors at best play a game of pin the drug on the patient which rarely has a favorable outcome.

By using Dr. Nagourney’s 20-year-old proprietary functional tumor profiling, we may find key sensitives to your specific tumor using customized assays based on current papers and our combined knowledge.

Most importantly, since The Nagourney Cancer Institute is a CLIA-approved lab, our patients, their medical teams, and insurance companies can legally receive and act upon the results, unlike research centers.

Our Newsletter

FibroFighters believes it is important to keep you informed on how we our keeping our promises and share new and exciting programs that may be a direct benefit to you and your caregiver team.

The First Edition will be published in early 2023. Let us know if you are interested in joining the Newsletter Team by sending an email to contactus@fibrofighters.org or by completing the Form on our Contact page.

Your Donation Can Make a Difference

Your support can make a difference in the lives of our Fibrolamellar patients and caregivers by supporting our patient directed initiatives.  

We support translational projects, pilot research studies, an upcoming clinical trial, and more!

Pictured: A Fighter with his younger brother supporting him in the background. Courtesy of Sharon Elizabeth Photography N.C.

Our Promise 4 Fibro Statement

FibroFighters Foundation does not underestimate the power of accountability and a public promiseMaking these promises to our community is a meaningful way to hold ourselves accountable to reaching foundation goalsBy making these promises we are making a commitment that we have some control to deliver results

Providing the promises listed below emboldens our team, personally, emotionally, and ethically to be responsible and committed to following through. 

  • Most importantly and based upon our founding principles we will continue and expand our commitment to advocate for each patient and caregiver who reaches out to us for support.  As part of this promise, we provide education to patients and the medical community regarding updated treatment options and the many specific nuances of fibrolamellar. 
  • Continue our work on “The FibroProject” at the Nagourney Cancer Institute (A CLIA-approved lab so results may be shared with your medical team and insurance companies) by offering functional profiling of patient’s tumor tissue samples utilizing the patients viable tumor’s cells as part of a customized drug assay designed by FibroFighters and Dr. Nagourney.
  • Expand the collaboration efforts already established between xCures and FibroFighters by now supporting our International Tumor Board, Link to tumor board sharing patient data in one easy-to-read format for quick review by the team of FLC experts allowing for a consensus outlining the next treatment steps.  Second begin to report on the real-world evidence we have been collecting and share its findings with the community on an ongoing and timely basis covering topics of real time patient interest such as which treatments are showing the most and least promise.  xCures will help us develop expanded access trials and key N of One local clinical trials, additionally they will help support researchers and pharma relating to FLC. 
  • Continue to recruit and strengthen our bench finding the most qualified doctors and researchers around the globe who share our passion for our patients and community by learning new ideas, thinking out of the box, and not conforming with the status quo.  
  • Leverage reporting from BostonGene and Natera to provide CLIA-approved results providing your team with more tools allowing them to offer you a greater number of options. If you enrolled in xCures we can add these reports into your xINFORM profile for further analysis. 
  • Continue to help move a clinical trial forward (Already FDA approved) utilizing a small molecule that has shown promising results in our FibroProject at the Nagourney Lab. 
  • Perhaps our most important promise is never giving up on you! I know how committed our Medical Director Dr. Kent and I are in finding answers for even the most difficult cases that everyone else have given up on. We will use every tool at our disposal currently and continue to find new paths forward.  Contact Dr. Kent paulkentmd@fibrofighters.org 
en English
X