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 Carcinoma.

Our ApproachMeet the Team

Dr. Kent Interviews Dr. Jordan Tasse Interventional Radiology Director at Rush University in Chicago

During an interview conducted by Dr. Kent, Dr. Tasse emphasized the significance of educating the community about lesser-known therapies.

At FibroFighters, our mission is to increase awareness about Fibrolamellar, and we strongly believe that this understanding can greatly improve individuals’ treatment plans. By sharing the insights from this interview with their medical team, individuals can assess whether these therapies suit their unique circumstances.

Check out the video by following the link below. 

Out Now! Winter/Spring 2024 Newsletter

Explore the latest news and updates from our Fibrolamellar community.

Read about new reasons for optimism when facing FLC, upcoming events and meet ups in the community, and hear a story of perserverance and love from one caregiver in the UK. 

Check it out! 

New Collaboration with Pangea Biomed

FibroFighters is proud to announce our new partnership with Pangea Biomed.

This adds another critical tool to better insights into clinical care for Fibrolamellar patients while continuing to gather important clinical data.

Check out the press release by following the link below. 

#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 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.

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.