Cystic Fibrosis Foundation

What Cystic Fibrosis Foundation does

The Cystic Fibrosis Foundation is a 501(c)(3) nonprofit founded in 1955 and headquartered in Bethesda, Maryland, with an additional research laboratory in Lexington, Massachusetts. Its mission is to cure cystic fibrosis and to support all people with the disease through research, care delivery, and community programs. The Foundation operates a vertically integrated ecosystem that includes the Therapeutics Development Network (the world's largest CF clinical trials network), the CF Foundation Patient Registry (covering over 80% of U.S. CF patients), a CF Therapeutics Lab, and an accredited network of more than 130 care centers and 35 affiliate programs serving approximately 40,000 people with CF in the United States. Patient-facing services include CF Foundation Compass case management, the CF Community Blog, Great Strides fundraising walks, the annual North American CF Conference, and the Mutation Analysis Program for genetic testing.

The Foundation uses a venture philanthropy model, committing early-stage capital to biotech companies developing CF therapies — recent commitments include up to $13M to SpliSense (SPL84 antisense oligonucleotide), up to $24M to Prime Medicine (gene editing), and up to $11M to 4D Molecular Therapeutics (4D-710 gene therapy) — and retains the potential for financial returns on successful therapies. Core research funding exceeds $200 million annually, and the Milestones III: Driven by a Dream campaign raised over $250 million from approximately 2,000 donors to support a planned $1.5 billion in research and clinical care investments over five years under the Foundation's new Five-Year Strategic Plan.

Go-to-market operates through community-led and event-driven channels: Great Strides walks, March on the Hill advocacy days, Teen Advocacy Day, NACFC, and digital properties (cff.org, blog, email, social media, multimedia). The Foundation generates revenue primarily through individual donor contributions, corporate partnerships, event fundraising, and venture philanthropy returns, and does not charge patients for care-related services. Governance is provided by a Board of Trustees led by Board Chair KC White, with President and CEO Michael P. Boyle, MD heading the executive team alongside CSO Steven Rowe, MD, COO/CFO Irena Barisic, Chief Policy and Advocacy Officer Mary Dwight, and incoming Chief Development Officer Heather Culp.

Name

Cystic Fibrosis Foundation

Legal name

Cystic Fibrosis Foundation

Website

https://cff.org

Company type

Private

Founded year

1955

Operating status

Operating

Headcount range

501–1,000 employees

Short description

The Cystic Fibrosis Foundation is a 501(c)(3) nonprofit founded in 1955 that funds research, drug development, and care programs to cure cystic fibrosis, serving the approximately 40,000 people with CF in the United States through a national network of accredited care centers, a patient registry, and a venture philanthropy investment model.

Ownership category

akta.pro rank

Product category

Cystic Fibrosis Research & Patient Support Nonprofit

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211), Grantmaking and Giving Services (81321)

SIC

Services-Commercial Physical & Biological Research (8731), Services-Medical Laboratories (8071)

akta.pro primary industry

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

akta.pro secondary industries

Cystic Fibrosis & Bronchiectasis Care (HLAKANAK), Clinical Trial Financial Management & Payments (Site Budgeting) (HLAGACAM), Clinical Operations & Monitoring FSP (CRA/CTM/Start-up) (HLAGAOAA)

Keywords

• Cystic fibrosis research
• Patient support services
• Clinical trials network
• Disease-focused nonprofit
• Venture philanthropy therapeutics

Headquarters

HQ city

Bethesda

HQ country

United States

HQ region

North America

Offices3 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donor Contributions: Individual donations from supporters, families, and the CF community. The Foundation runs fundraising campaigns including Milestones III: Driven by a Dream which raised over $250 million.
2. Corporate Partnerships: Corporate sponsors support events like Great Strides walks and provide funding for research initiatives.
3. Event Fundraising: Revenue from events including Great Strides walks, Galas, and other community fundraising activities.
4. Venture Philanthropy Returns: The Foundation uses a venture philanthropy model providing early-stage funding to companies developing CF drugs, with potential for returns on successful therapies.

Go-to-market motion2 records

Distribution channels5 records

Marketing channels10 records

Core offering

The Cystic Fibrosis Foundation is a donor-supported nonprofit that funds CF research and drug development, accredits and supports a national network of 130+ specialized care centers, provides case management and patient support through CF Foundation Compass, runs the world's largest CF clinical trials network (Therapeutics Development Network), maintains a CF Patient Registry covering the majority of U.S. CF patients, and operates a dedicated Therapeutics Lab. The Foundation provides free services to the CF community and invests more than $200 million annually in research and clinical care.

Product overview

The Cystic Fibrosis Foundation is a nonprofit healthcare organization (not a technology product company) that operates a comprehensive ecosystem of programs and services to support people with cystic fibrosis. The Foundation's core offerings include: patient support through Compass case management services; clinical research infrastructure including the Therapeutics Development Network (the world's largest CF clinical trials network) and the CF Foundation Patient Registry; care center accreditation for over 130 specialized centers; drug development pipeline tracking tools; clinical trial finder resources; community engagement through the CF Community Blog and Great Strides fundraising walks; professional development via the North American CF Conference; and direct research funding through academic and industry programs. The Foundation also funds its own therapeutics laboratory and supports genetic testing through the Mutation Analysis Program. These programs work together to advance CF research, improve patient care, and ultimately find a cure for cystic fibrosis.

Differentiator

Problem solved

Functional benefit

Brands

• CF Foundation Therapeutics (CFFT): The therapeutics division of the Cystic Fibrosis Foundation that supports drug development and maintains a dedicated CF research lab.
• CF Foundation Compass

Products and services

• CF Foundation Compass A dedicated case management service that helps people with CF and their families navigate insurance options, connect to legal information and experts, find financial resources, and address other life issues related to living with cystic fibrosis.
• Drug Development Pipeline An interactive pipeline tool that tracks the progress of CF drugs in development or already in use by patients, enabling users to explore potential therapies and their development stages.
• Clinical Trial Finder An interactive search tool that helps individuals find clinical trials that may be appropriate for them, with support from a designated Clinical Trial Navigator.
• Therapeutics Development Network (TDN) The largest CF clinical trials network in the world, bringing together experts from across the country to evaluate the safety and effectiveness of new CF therapies through clinical studies, funded by the CF Foundation.
• CF Foundation Patient Registry A registry collecting health information from people with CF receiving care at CF Foundation-accredited care centers, used to create care guidelines, assist care teams, guide quality improvement, and support research and clinical trial design.
• CF Foundation Care Center Accreditation Accreditation program for CF care centers across the U.S., supporting more than 130 care centers and 35 affiliate programs that provide specialized CF care.
• Research Funding Programs Academic and industry funding opportunities supporting cystic fibrosis research and professional development, including awards for research and training.
• Mutation Analysis Program A program providing free genetic testing to people with cystic fibrosis to help identify their CF gene mutations.
• Cystic Fibrosis Foundation Therapeutics Lab A dedicated research laboratory supporting CF therapeutics development and research initiatives.
• North American CF Conference (NACFC) An annual collaborative and educational forum for CF professionals to discuss the latest advances in CF research, care, and drug development.

Quantifiable outcome

• Nearly every CF drug available today was made possible because of Foundation support
• +3 more outcomes

Named customers1 record

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Three partnerships are on record, tiered supporting.

• AntiversesupportingStrategic or Co-development Partner · 3 March 2026The Foundation entered a research agreement with Antiverse to design novel antibodies targeting the extracellular region of the CFTR protein using Antiverse's AI-driven antibody discovery platform. The collaboration applies antibody discovery technology toward identifying potential new therapies for cystic fibrosis.
• INCubator for Antibacterial Therapies in Europe (INCATE)supportingStrategic or Co-development Partner · 26 February 2026The CF Foundation joined INCATE's Venture Partner Program to fight drug-resistant infections. A Foundation representative serves on INCATE's selection committee. The collaboration helps shape development of anti-infectives and builds relationships with infection-focused innovators for potential future investments.
• INCATEsupportingStrategic or Co-development Partner · 26 February 2026European nonprofit incubator that accelerates antimicrobial research by connecting researchers and startup companies with experts in development of new anti-infectives. The Foundation collaborates to address chronic, difficult-to-treat infections common in CF patients.

Scale indicators11 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• Muscular Dystrophy Association (MDA): Disease-specific nonprofit funding neuromuscular disease research, running a network of care centers, and operating a community fundraising model (e.g., MDA Shamrocks) structurally similar to CFF's Great Strides and care center network.
• March of Dimes: Voluntary health organization funding maternal and infant health research, advocacy, and community programs — directly comparable as a disease/population-focused nonprofit with research funding and grassroots fundraising.
• ALS Association: U.S. voluntary health organization funding ALS research, patient services, and advocacy — the closest analog to CFF in mission, venture philanthropy posture, and disease-specific nonprofit model.
• Juvenile Diabetes Research Foundation (JDRF): Type 1 diabetes voluntary health organization funding research and care with a venture philanthropy approach that historically generated returns reinvested into mission — directly comparable to CFF's biotech-investment flywheel.
• National Multiple Sclerosis Society: Voluntary health organization funding MS research, supporting patient services, and running large-scale community fundraising walks — closely comparable to CFF across mission, scale, and operating model.
• Leukemia & Lymphoma Society: Blood-cancer voluntary health organization with a major research-grant and venture philanthropy program (e.g., Therapy Acceleration Program) — a directly comparable peer in scale, disease-specific research funding, and biotech co-investment.

Broad incumbents

• American Heart Association: Massive voluntary health organization funding cardiovascular research, advocacy, and community programs. Comparable in operating scale, fundraising events, and research grantmaking breadth but materially broader than CFF's single-disease focus.
• American Cancer Society: Larger, broader voluntary health organization funding cancer research, patient support, and advocacy. Overlaps CFF on research grantmaking and patient services but operates across many cancer types rather than a single rare disease.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/user/CFeducation
• Facebookfacebook.com/cysticfibrosisfoundation
• LinkedInlinkedin.com/company/13317
• Xx.com/CF_Foundation

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 records

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments73 records

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

Frequently asked questions about Cystic Fibrosis Foundation