The Fibrolamellar Cancer Foundation
Cycle 1
Fibrolamellar carcinoma (FLC), also known as fibrolamellar hepatocellular carcinoma, is a rare liver cancer that primarily occurs in adolescents and young adults who have no history of liver disease. In the early stages of the disease, affected patients often have no symptoms, so by the time the cancer is found, it may have already spread beyond the liver. When symptoms develop, they may include abdominal pain, weight loss, and malaise.
Last updated 04/30/2025
Clinical
Disease Class
Abdominal surgical diseases
Gastroenterological diseases
Hepatic diseases
Body Systems
Digestive
Metabolic
Organs
Bones
Brain
Liver
Lungs
Lymph fluid, nodes, ducts, vessels
Known Genetic Link
No, the disease is not known to have a genetic basis
causative_genes
None specified / unknown
contributory_genes
None specified / unknown
Type of Inheritance
Not specified / unknown
Newborn Screening
No
Disease Mechanism(s)
Pathogenic mutation
Age of Onset
Adolescence (12-17)
Adulthood (age 18-64)
Middle childhood (6-11)
Average Age at Diagnosis
Adolescence (12-17)
Adulthood (age 18-64)
Life Expectancy
Adolescence (12-17)
Adulthood (age 18-64)
Affected Sex(es)
Female
Intersex
Male
National Prevalence
101-1000
Global Prevalence
1001-10000
National Incidence
Less than 10
Global Incidence
Less than 10
Symptoms / Phenotypes
abdominal swelling
bruising susceptibility
gynecomastia
hemorrhage/bleeding
jaundice
malaise
mass / neoplasm
pain, abdominal
vomiting / nausea
weight loss
Biomarkers
Diagnostic
· DNAJB1-PRKACA
Existing Therapies
None
Organizational & Research
Cell Lines
Cancer/tumor cells
Cell Lines, Institution
University of North Carolina (UNC)
Cell Lines, Involvement
Consulted
Funded
Cell Lines, share
All our cell lines are freely available
Disease Model
Other
Disease Model, Involvement
Consulted
Funded
Disease Model, share
All our disease models are freely available
Clinical Trial Role
Data sharing
Focus group
Funding
Meeting with regulators
Recruitment and outreach, patients
Recruitment and outreach, trial sites/physicians
Results dissemination, publication
Study material design, review (not protocol)
Study protocol design, review
Travel coordination
Biobank, Institution
Massachusetts General Hospital
Biobank, Involvement
Consulted
Designed
Funded
Own
Center of Excellence, Institution
None
Registry
Yes, we have collaborated on a registry
Data Collected, Registry
Clinical data
Longitudinal natural history data
Medication usage
Patient contact info
Patient-reported data
Data Entered by, Registry
Patients
Platform, Registry
REDCap
Natural History Study
Yes, we have collaborated on a natural history study
Data Collected, Natural History Study
Electronic health records/electronic medical records
Medication usage
Patient-reported outcomes
Prospective data
Retrospective data
Platform, Natural History Study
REDCap
xCures
FDA Patient Listening Session
No
FDA Patient-Focused Drug Development (PFDD) Program
No
ICD Codes
Yes, we have an ICD-11 code specific to our exact disease
Diagnostic Guidelines
Yes, we have published formal guidelines in a peer-reviewed journal
Science Advisory Board Policies
Yes, willing to share SAB policies
Research Network Policies
Has CRN and willing to share policies
Research Roadmap
Yes we have a Research Roadmap, and will share policies
International Chapters
None
International Partners
None