The Fibrolamellar Cancer Foundation Inc

Name

The Fibrolamellar Cancer Foundation Inc

Legal name

Fibrolamellar Cancer Foundation Inc

Website

https://fibrofoundation.org

Company type

Private

Founded year

2009

Operating status

Operating

Headcount range

1–10 employees

Short description

The Fibrolamellar Cancer Foundation (FCF) is a 501(c)(3) public charity founded in 2009 that funds research into ultra-rare fibrolamellar liver cancer through grants, a global biobank and disease-models repository, the CAVATICA bioinformatics platform, and patient-support programs serving patients, caregivers, and researchers worldwide.

Ownership category

akta.pro rank

Product category

Rare Disease Research Foundation

NAICS

Voluntary Health Organizations (813212), Scientific Research and Development Services (5417)

SIC

Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Clinical Trial Site Operations & Study Coordination (HLAGACAE), Clinical Trial Sample Collection & Site Phlebotomy Services (HLAGACAJ), Public Health Block Grants & Formula Funding Administration (HLAJALAD)

Keywords

• Rare disease research funding
• Cancer biobank services
• Patient advocacy support
• Genomic data platform
• Nonprofit health foundation

Headquarters

HQ city

Greenwich

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Marketing or Sales, Others

Revenue model

1. Donations and Charitable Contributions: FCF is a 501(c)(3) tax-exempt public charity that relies on donations from individuals, foundations, and organizations. 100% of donated funds are used to drive fibrolamellar research. Administrative and overhead costs are covered by the Chuck and Marna Davis Foundation and Stone Point Capital.

Go-to-market motion2 records

Distribution channels5 records

Marketing channels7 records

Core offering

The Fibrolamellar Cancer Foundation Inc funds fibrolamellar carcinoma (FLC) research through grants and maintains a patient-donated biobank of tissue and cell samples along with a repository of disease models for researchers. It provides patient and family support services, including a peer support program, patient assistance fund, and disease information resources, and operates a bioinformatics platform for FLC genomic data analysis.

Product overview

The Fibrolamellar Cancer Foundation (FCF) operates as a nonprofit organization rather than a traditional product company. Its offerings consist of patient/caregiver support services and research-enabling infrastructure for the fibrolamellar carcinoma community. The core portfolio includes: a Biobank (operated with Massachusetts General Hospital) providing biospecimens to researchers; a Disease Models Repository (partnered with Dana-Farber) distributing cell lines and xenograft models; a $10,000-per-model Model Awards Program incentivizing new FLC research models; a Research Grant Program ($20.0M+ funded since 2010); the CAVATICA Bioinformatics Platform (partnered with Velsera) for data sharing and analysis; and the FCF Assistant AI chatbot for information retrieval. Supporting services include a Clinical Trial Patient Assistance Program, FibroConnect Mentor Program, Find A Doctor database, and annual Patient & Family Gatherings.

Differentiator

Problem solved

Functional benefit

Products and services

• Fibrolamellar Cancer Research Grant Program
• Fibrolamellar Carcinoma Biobank Patient-donated biobank of fibrolamellar carcinoma tissue and cell samples provided to researchers studying this rare liver cancer.
• Fibrolamellar Carcinoma Disease Models Repository Repository of fibrolamellar carcinoma disease models, including cell lines and patient-derived xenografts, available to researchers for translational studies.
• CAVATICA Bioinformatics Platform (FLC Data) Bioinformatics platform for the analysis and sharing of fibrolamellar carcinoma genomic data among researchers worldwide.
• FCF Assistant AI-based information tool from the foundation providing fibrolamellar carcinoma information to patients, families, and the broader FLC community.
• FibroConnect Peer Support Program Peer support program connecting fibrolamellar carcinoma patients and families for community and shared experience.
• Patient Assistance Fund Financial assistance fund providing support to fibrolamellar carcinoma patients and families facing treatment-related costs.

Quantifiable outcome

• $20.0 million in research grants funded since 2010
• +3 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration1 record

AI capability2 records

Feature3 records

Partnerships

Six partnerships are on record, tiered core and minor.

• Dialectic TherapeuticscoreStrategic or Co-development Partner · 21 April 2025FCF established partnership with Dialectic Therapeutics to supply the experimental drug DT2216 for a clinical trial involving fibrolamellar patients. This partnership supports FCF's goal of advancing new therapeutic options for FLC.
• Dracen Pharmaceuticals Inc.coreStrategic or Co-development Partner · 27 February 2024FCF partnered with Dracen Pharmaceuticals to launch a phase I/II clinical trial combining subcutaneous DRP-104 (sirpiglenastat) with intravenous durvalumab to treat fibrolamellar carcinoma. FCF supports patient education, outreach, and trial coordination.
• VelseracoreTechnology or IntegrationFCF partnered with Velsera to develop CAVATICA, a user-friendly bioinformatics data repository offering researchers low-cost access to shared FLC datasets, cloud-based analysis tools, and collaborative project management.
• Massachusetts General HospitalcoreStrategic or Co-development PartnerFCF's biobank is operated in partnership with Massachusetts General Hospital in Boston. The biobank collects, stores, and distributes biospecimens and associated de-identified clinical data donated by fibrolamellar patients.
• Dana-Farber Cancer Institute - Center for Patient Derived ModelscoreStrategic or Co-development PartnerFCF partners with Dana-Farber's Center for Patient Derived Models to centralize the distribution, characterization, and expansion of FLC disease model systems including cell lines and xenografts.
• Eisner Amper LLPminorOthersEisner Amper LLP serves as FCF's auditor, providing independent financial statement audits.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• TargetCancer Foundation: A rare cancer research nonprofit that funds grants, supports patients, and advances clinical trial access for underserved rare cancer populations—comparable in mission and scale to FCF.
• Cholangiocarcinoma Foundation: A disease-specific nonprofit dedicated to a rare liver/biliary cancer (cholangiocarcinoma), funding research grants, building research infrastructure, supporting patient communities, and partnering with pharmaceutical companies on clinical trials—highly comparable to FCF's model applied to fibrolamellar carcinoma.
• Children's Tumor Foundation: A leading rare disease research foundation (neurofibromatosis) that funds research, operates a biobank and clinical initiatives, and partners with biotech—closely aligned with FCF's vertically integrated research infrastructure model.
• Rally Foundation for Childhood Cancer Research: A nonprofit focused on childhood and adolescent cancers that funds research grants, supports young patients and families, and drives community-led fundraising—mirroring FCF's emphasis on adolescent/young adult rare-cancer patients.
• Chordoma Foundation: A rare cancer research foundation that funds grants, builds biobanks and disease models, and partners with pharma to advance therapies for chordoma—directly analogous to FCF's vertically integrated rare-cancer nonprofit operating model.
• Pancreatic Cancer Action Network (PanCAN): A cancer-specific nonprofit that combines research grants, patient services, clinical trial support, and advocacy for a high-mortality cancer—mirrors FCF's integrated research + patient support + trial enablement structure.

Broad incumbents

• V Foundation for Cancer Research: A major cancer research nonprofit funding grants across many cancer types—comparable as a research-grant funding nonprofit, though at much larger scale and with broader cancer focus than FCF's single-disease model.
• American Cancer Society: The largest U.S. cancer nonprofit, funding research grants, patient support, and advocacy across all cancer types—serves as the dominant incumbent against which smaller disease-specific foundations like FCF compete for donor mindshare.
• National Organization for Rare Disorders (NORD): The umbrella advocacy and research-funding organization for all rare diseases in the U.S., operating at much greater scale and breadth than disease-specific foundations like FCF; relevant as the macro-rare-disease ecosystem player.
• Damon Runyon Cancer Research Foundation: A cancer research nonprofit that funds high-impact research grants to early-career scientists—comparable grant-making nonprofit model, though without FCF's patient-services and disease-model components.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xtwitter.com/fibrofoundation
• YouTubeyoutube.com/channel/UCDRepEExYSXVSKRA7Ul_K2g
• Facebookfacebook.com/fibrofoundation
• Instagraminstagram.com/fibrofoundation
• LinkedInlinkedin.com/company/fibrolamellar-cancer-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about The Fibrolamellar Cancer Foundation Inc