Our Members

We're patients and their loved ones, from all around the world

Our Researchers

Leading scientists are using our data to advance fibrolamellar studies. Three major papers published so far.

Our Goals

Earlier diagnostics. Better treatments. And, one day, a cure

U.S. States
Survey Questions Answered

Spark Research By Joining

We speed research by having fibrolamellar patients around the world share their stories

We foster hope and action


Collective Medical Journies

May contain important clues for scientists


Patients and families across the globe are helping

Diagnostics & Treatments

Earlier diagnostics and better treatments are what we’re fighting for


Share only with the researchers you wish

FAQ: Fibrolamellar Facts You Need

Newly diagnosed? Get the key facts you need

FAQ: The Registry Overview

How the Registry works - and benefits you

FAQ: For Researchers Use Our Data

It's fast and easy for researchers to apply to study our data

We are trusted by

Leading Scientists & Doctors

Multiple research studies are now in progress
based on FibroRegistry data

What Registry members say

Join our nearly 200 participants around the world fighting fibrolamellar together