Pulmonary Fibrosis Foundation

What Pulmonary Fibrosis Foundation does

The Pulmonary Fibrosis Foundation (PFF) is a 501(c)(3) nonprofit patient-advocacy organization founded in 2000 and headquartered in Chicago, Illinois, serving the U.S. pulmonary fibrosis (PF) and interstitial lung disease (ILD) community of more than 250,000 patients, plus their caregivers and the clinicians and researchers who treat and study these conditions. The Foundation delivers its mission—accelerating research, empowering patients, and transforming care—through a free programmatic portfolio comprising the PFF Help Center (toll-free phone and email support), the PFF Care Center Network of 81+ affiliated hospitals and clinics, a nationwide network of 150+ in-person and virtual support groups, the PFF Community Registry (a longitudinal observational database with 3,000+ enrollees hosted on HIPAA-compliant REDCap Cloud), an annual PFF Summit conference, a seven-city PFF Walk fundraising series, the Pulmonary Rehabilitation Toolkit developed with AACVPR, the Clinical Trials Education Center, and an extensive library of English- and Spanish-language educational fact sheets and webinars.

All programs and resources are offered free of charge with no membership required. Revenue is generated entirely through donations across four streams: individual giving, corporate giving (organized in Partner, Developing Partner, Founding Partner, and Visionary Partner tiers), fundraising events such as PFF Walk and Broadway Belts for PFF!, and planned/legacy giving through the Albert Rose Legacy Society. The Foundation distributes services directly via its website, the PFF Help Center call center, the Care Center Network, support groups, and the Registry, with outreach amplified through Facebook, LinkedIn, YouTube, Instagram, and X. The organization is governed by a volunteer Board of Directors (recently expanded with Dr. Bradford Bemiss and Dr. Krishna Thavarajah in July 2026), holds a Charity Navigator four-star rating, BBB Wise Giving Alliance accreditation, National Health Council Standards of Excellence certification, and a Guidestar/Candid Platinum Seal of Transparency, and is supported by named corporate and family-foundation sponsors including Boehringer Ingelheim, Chiesi, Genentech, United Therapeutics, AACVPR, and the University of Michigan SABER Data Coordinating Center.

Name

Pulmonary Fibrosis Foundation

Legal name

Pulmonary Fibrosis Foundation

Website

https://pulmonaryfibrosis.org

Company type

Private

Founded year

2000

Operating status

Operating

Headcount range

11–50 employees

Short description

The Pulmonary Fibrosis Foundation is a 501(c)(3) nonprofit that funds research and delivers free patient-support programs—including a help center, a 81+ site Care Center Network, 150+ support groups, and a longitudinal Community Registry—to more than 250,000 Americans living with pulmonary fibrosis and interstitial lung disease.

Ownership category

akta.pro rank

Product category

Nonprofit Patient Advocacy Services

NAICS

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

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

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

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Pulmonary fibrosis advocacy
• Patient support services
• Disease education resources
• Clinical research registry
• Peer support programs

Headquarters

HQ city

Chicago

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: Individual donors contribute to fund research, programming, and services for PF and ILD patients.
2. Corporate Giving: Corporate partners, sponsors, and foundation grants provide funding. Includes Partner, Developing Partner, Founding Partner, and Visionary Partner tiers.
3. Fundraising Events: PFF Walk events, Broadway Belts for PFF!, Team PFF, and community fundraising activities generate revenue.
4. Planned Giving: Albert Rose Legacy Society accepts planned giving, bequests, and legacy donations.

Pricing tiers

Go-to-market motion1 record

Distribution channels8 records

Marketing channels10 records

Core offering

The Pulmonary Fibrosis Foundation provides free programs and services for the pulmonary fibrosis (PF) and interstitial lung disease (ILD) community. Its offerings include the PFF Help Center (phone/email support), the PFF Care Center Network (81+ affiliated medical centers), the PFF Community Registry (an online observational research database hosted on REDCap Cloud), more than 150 support groups nationwide, the PFF Summit annual conference, PFF Walk fundraising events, and a library of educational fact sheets, webinars, and a Pulmonary Rehabilitation Toolkit. The Foundation also funds PF research, including the PFF Scholars Grant program awarding $100,000 to researchers annually.

Product overview

The Pulmonary Fibrosis Foundation offers a comprehensive suite of free programs and services for the pulmonary fibrosis and interstitial lung disease community. The core offerings include the PFF Help Center (telephone and email support), the PFF Care Center Network (81 affiliated medical centers nationwide), and the PFF Community Registry (an online research database). The foundation also provides educational resources including a Pulmonary Rehabilitation Toolkit, fact sheets on various PF types and medications, and webinars. Community engagement is supported through PFF Support Groups (150+ groups), the PFF Walk fundraising events, and the annual PFF Summit conference. The Clinical Trials Education Center helps patients find matching clinical trials. All programs and services are provided free of charge with no membership required.

Differentiator

Problem solved

Functional benefit

Products and services

• PFF Help Center A staff-supported help center providing guidance via phone (844.825.5733) or email, helping patients understand their diagnosis, find doctors, connect with support groups, learn about research studies, and access free educational materials.
• PFF Care Center Network
• PFF Community Registry
• Pulmonary Rehabilitation Toolkit
• PFF Support Groups
• Clinical Trials Education Center
• Educational Fact Sheets and Materials
• PFF Summit
• PFF Walk

Quantifiable outcome

• 81+ hospitals and clinics in Care Center Network
• +3 more outcomes

Named customers4 records

Segments1 record

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

Two partnerships are on record, tiered core.

• American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR)coreStrategic or Co-development PartnerPartner in developing the Pulmonary Rehabilitation Toolkit, providing professional expertise in cardiac and pulmonary rehabilitation.
• University of Michigan (SABER Data Coordinating Center)coreTechnology or IntegrationSABER team at University of Michigan manages daily operations of the PFF Community Registry, develops and manages the Registry, ensures proper data completion, and partners with researchers.

Scale indicators8 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• COPD Foundation: Nonprofit serving patients with COPD and related chronic lung disease through education, advocacy, and research. Direct peer in the chronic pulmonary space with overlapping pharma sponsor base and similar patient-support service model.
• ALS Association: Disease-focused nonprofit providing advocacy, research funding, and care services for amyotrophic lateral sclerosis patients. Highly comparable structure: chapter network, walk events, pharma/biotech sponsorships, free patient education, registry-style programs.
• Pulmonary Hypertension Association: Patient advocacy organization for pulmonary hypertension with research funding, support groups, and healthcare provider engagement. Closely mirrors PFF's structure around a rare/serious pulmonary condition with analogous revenue (donations, walks, pharma sponsorships).
• Cystic Fibrosis Foundation: Disease-specific nonprofit funding research and patient services for cystic fibrosis. Closely analogous to PFF's disease-specific model, including care center network, research grants, and pharma partnerships, but with a more mature and better-funded organization.
• Alpha-1 Foundation: Nonprofit for Alpha-1 antitrypsin deficiency, a hereditary cause of pulmonary fibrosis. Direct peer: rare pulmonary disease advocacy, research funding, registry program, and pharma partnerships mirror PFF's playbook at smaller scale.

Broad incumbents

• American Lung Association: Larger, century-old nonprofit covering all lung diseases including pulmonary fibrosis. Directly comparable mission (research funding, advocacy, patient education) but operates across the full respiratory spectrum rather than focusing exclusively on PF.
• American Cancer Society: Large multi-disease nonprofit funding cancer research and providing patient support. Analogous operating model (research grants, walks, planned giving, toll-free help lines) at much larger scale; competes for general health-charity donor mindshare.

Others

• National Organization for Rare Disorders (NORD): Umbrella rare disease nonprofit representing ~300 patient organizations including PF communities. Comparable in advocacy and federal policy engagement, but operates as a meta-organization rather than direct disease service delivery.
• National Heart, Lung, and Blood Institute (NHLBI): NIH institute funding pulmonary research including PF. Not a direct competitor for donations, but a key federal counterpart whose research priorities shape PFF's grantmaking strategy and Registry use cases.

Emerging players

• Lung Cancer Research Foundation: Disease-specific nonprofit funding lung cancer research and providing patient education. Smaller and more research-focused than PFF, but comparable disease-area positioning and competition for lung-focused donor dollars.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/PFFORG
• YouTubeyoutube.com/channel/UCX7PIZrKrZb6CWJncJboI2g
• Facebookfacebook.com/PFFORG
• LinkedInlinkedin.com/company/pfforg
• Instagraminstagram.com/pfforg

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Pulmonary Fibrosis Foundation