Cystic Fibrosis Research Institute

What Cystic Fibrosis Research Institute does

Cystic Fibrosis Research Institute (CFRI) is a 501(c)(3) nonprofit organization incorporated in California in 1975 (EIN 51-0169988), headquartered at 1731 Embarcadero Road, Suite 210, Palo Alto. The organization pursues a four-part mission — research, education, advocacy, and psychosocial support — for the cystic fibrosis community in the United States and globally. Its research arm funds postdoctoral and principal-investigator work through the Elizabeth Nash Memorial Fellowship ($75,000 per year for two years) and the New Horizons Research Campaign (minimum $80,000 per year awards), with current funding supporting gene-therapy nanocarrier, bacteriophage, CFTR variant, pulmonary ionocyte, and AAV-mediated base-editing research at institutions including Stanford, Yale, UCLA, Boston Children's Hospital, University of Washington, University of Alabama at Birmingham, University of Pittsburgh, University of Iowa, UC Irvine, and the Research Institute at Nationwide Children's Hospital. CFRI also runs the Patrick Nash Fellows Training Symposium, which trains early-career clinicians in adult CF care.

CFRI's education and support portfolio comprises the annual hybrid National CF Education Conference (entering its 39th edition in July 2026 at the Ameswell Hotel, Mountain View), the monthly CF Community Voices podcast, biannual newsletters (18,000 English and 6,000 Spanish copies per cycle), nearly 10,000 distributed brochures per year, nine monthly facilitated virtual support groups (600+ participants), free wellness classes (yoga, Pilates, Qigong, strength training), counseling co-pay subsidies up to $125 per session for six sessions, and multiple retreats including a Summer Retreat, Embrace Mothers Retreat, and CF Adult Retreat. The organization engages 19,000+ social-media followers across Facebook, Twitter, LinkedIn, and Instagram and distributes a weekly eNewsletter to 15,000+ subscribers.

CFRI's business model is donation- and sponsorship-driven rather than commercial. Revenue streams comprise individual donations (online, direct mail, planned giving, bequests, and a "Breath of Fresh Air" gala), corporate sponsorships from CF pharmaceutical and nutrition companies (Vertex Pharmaceuticals, Viatris, Genentech, AbbVie/CREON, Boomer Esiason Foundation, Sionna Therapeutics, Gilead, Nestlé Health Science, and Bruker Biomedical Systems), modest event registration fees for the conference (full $240, Friday $60, Saturday $160, Sunday $55; virtual attendance free), and channel-partner referrals through CF Foundation-accredited care centers. CFRI states it crossed the million-dollar revenue threshold in 2012 and has held Charity Navigator 4-star, GuideStar Platinum, and GreatNonprofits ratings.

Name

Cystic Fibrosis Research Institute

Legal name

Cystic Fibrosis Research Institute

Website

https://cfri.org

Company type

Private

Founded year

1975

Operating status

Operating

Headcount range

1–10 employees

Short description

Cystic Fibrosis Research Institute is a 501(c)(3) nonprofit founded in 1975 and headquartered in Palo Alto, California, that funds CF research, hosts the annual National CF Education Conference, and delivers education, advocacy, and psychosocial support programs to people with cystic fibrosis and their families in the U.S. and globally.

Ownership category

akta.pro rank

Product category

Disease-Focused Nonprofit Services (Cystic Fibrosis)

NAICS

Grantmaking and Giving Services (81321), Scientific Research and Development Services (5417), Professional and Management Development Training (611430)

akta.pro primary industry

Cystic Fibrosis & Bronchiectasis Care (HLAKANAK)

Keywords

• Cystic fibrosis research
• Nonprofit patient advocacy
• Medical research funding
• Psychosocial support services
• Health education programs

Headquarters

HQ city

Palo Alto

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, Infrastructure, Others, Supply Chain

Revenue model

1. Donations and Contributions: CFRI operates as a 501(C)(3) nonprofit organization (EIN 51-0169988) funded primarily through donations from individuals, families, and supporters of the CF community. The organization conducts regular fundraising campaigns including direct mail, online donations, and special appeals. Donate page is available at cfri.app.neoncrm.com/forms/donation.
2. Corporate Sponsorships: Pharmaceutical companies and healthcare organizations sponsor CFRI programs, events, and initiatives. Major sponsors include Vertex Pharmaceuticals, Viatris, Genentech, AbbVie, Sionna Therapeutics, and Boomer Esiason Foundation. Sponsorships fund specific programs such as the National CF Conference, Patrick Nash Fellows Training Program, support groups, wellness classes, and advocacy efforts.
3. Event Registration Fees: Revenue generated from conference and retreat registration fees. The 39th National CF Education Conference (July 2026) charges full registration at $240, Friday-only at $60, Saturday at $160, Sunday at $55, with virtual attendance free of charge. This represents a partial cost recovery mechanism rather than profit center.
4. Planned Giving and Bequests: CFRI offers planned giving options for donors including bequests, trusts, and other legacy giving vehicles. The organization's history notes that nearly all original founders have lost children to CF and have remained active through bequests and ongoing commitment.

Pricing tiers

Go-to-market motion3 records

Distribution channels7 records

Marketing channels10 records

Core offering

CFRI is a 501(c)(3) nonprofit that funds innovative cystic fibrosis research through grants and fellowships, and operates education, advocacy, and psychosocial support programs for the CF community. Named offerings include the New Horizons Research Campaign, Elizabeth Nash Memorial Fellowship, Patrick Nash Fellows Training Program, the National CF Education Conference, CF Community Voices podcast, counseling support, support groups, wellness classes, community retreats, and a patient assistance resource directory.

Product overview

Cystic Fibrosis Research Institute (CFRI) is a 501(c)(3) nonprofit organization founded in 1975 that funds innovative CF research and delivers education, advocacy, and psychosocial support programs. The organization operates several named research programs including the New Horizons Research Campaign and Elizabeth Nash Memorial Fellowship for postdoctoral researchers, and the Patrick Nash Fellows Training Program for clinical trainees. CFRI's education portfolio encompasses the National CF Education Conference, CF Community Voices Podcast Series, and biannual newsletters. Support services include counseling assistance, multiple support groups, wellness classes, and community retreats for adults with CF and mothers of family members. The advocacy arm runs awareness campaigns, cancer awareness initiatives, and provides self-advocacy and legislative toolkits. A comprehensive patient assistance resources directory connects individuals to pharmaceutical programs, financial assistance, scholarships, and international resources.

Differentiator

Problem solved

Functional benefit

Products and services

• New Horizons Research Campaign Grants program providing awards to academic and medical institutions conducting innovative CF research, awarded annually to multiple investigators nationwide.
• Elizabeth Nash Memorial Fellowship Two-year postdoctoral fellowship awarded annually to CF researchers at academic and hospital institutions.
• Patrick Nash Fellows Training Program Training program and symposium for CF clinical trainees and physician researchers up to two years post-fellowship/residency, focusing on multi-organ impact of CF and research collaboration.
• National CF Education Conference Annual hybrid education conference for people with CF, families, caregivers, and healthcare providers featuring 30+ speakers, research presentations, support groups, awards dinner, and dance party.
• CF Community Voices Podcast Series Monthly video podcast series created by and for the CF community covering diverse CF-related topics, available on Podbean and YouTube.
• CFRI Community Newsletters Biannual newsletters and weekly eNewsletter column providing updates, resources, and information to the CF community in English and Spanish.
• Counseling Support Program Financial support for individual therapy sessions for people with CF and their immediate family members, covering six sessions per year with licensed providers.
• CFRI Support Groups Monthly online peer-to-peer support groups for adults with CF, caregivers, teens, bereaved individuals, post-transplant patients, Spanish-speaking community members, and other CF cohorts.
• CF Wellness Classes Free drop-in wellness classes including yoga, Pilates, strength training, Qigong, cardio barre, and dance held twice monthly for the CF community.
• CFRI Community Retreats Multi-day residential retreats for adults with CF and mothers of children or adults with CF providing education, coping skills, social support, and peer connection.
• CF Adult Retreat Annual retreat for adults with CF aged 18 and older featuring educational presentations, exercise programs, and facilitated support group sessions.
• Patient Assistance Resources Comprehensive resource directory connecting CF patients to pharmaceutical assistance programs, financial aid, scholarships, insurance and billing support, and international resources.
• CF Awareness Month Annual awareness campaign held each May featuring advocacy events, social media engagement, and educational tools to spread cystic fibrosis awareness.
• Cancer & CF Awareness Program Education and awareness program highlighting the elevated cancer risk among people with CF, promoting early screening for colorectal, pancreatic, liver, skin, and cervical cancers.

Quantifiable outcome

• Over 95% of conference participants improved their CF knowledge
• +3 more outcomes

Named customers11 records

Segments6 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

15 partnerships are on record, tiered flagship, core and minor.

• Vertex PharmaceuticalsflagshipStrategic or Co-development Partner · 1 January 2026Vertex Pharmaceuticals is a major sponsor of CFRI programs including the Patrick Nash Fellows Training Program, National CF Education Conference, support groups, wellness classes, advocacy programs, and CF Community Voices podcast series. Vertex manufactures CFTR modulator therapies (Kalydeco, Orkambi, Symdeko, Trikafta) and provides patient support through their Guidance & Patient Support (GPS) program. Collaboration focuses on education, advocacy, and patient support rather than research funding.
• ViatrisflagshipStrategic or Co-development Partner · 1 January 2026Viatris sponsors multiple CFRI programs including counseling support, wellness classes, Patrick Nash Fellows Training Program, National CF Education Conference, CF Awareness Month activities, and advocacy efforts. Viatris provides patient assistance for Tobi Podhaler through PODCARE+ program and free medications through their Patient Assistance Program. Partnership supports CF community education and access to therapies.
• GenentechcoreStrategic or Co-development Partner · 1 January 2026Genentech sponsors CFRI support groups and advocacy programs. Provides co-pay assistance for Pulmozyme through their Pulmozyme Co-pay Program (up to $10,000/year). Collaboration supports CF community access to respiratory therapies and financial assistance.
• Boomer Esiason FoundationcoreStrategic or Co-development Partner · 1 January 2026Boomer Esiason Foundation sponsors CFRI counseling support, support groups, and wellness classes. The foundation, founded by NFL quarterback Boomer Esiason whose son has CF, provides IVF grants, financial hardship assistance, and scholarships for the CF community.
• Sionna TherapeuticsminorStrategic or Co-development Partner · 1 January 2026Sionna Therapeutics sponsors the National CF Education Conference and CF Awareness Month activities. Sionna is developing novel CFTR modulators for cystic fibrosis treatment.
• AbbViecoreStrategic or Co-development Partner · 1 January 2026AbbVie (through CREON CFCareForward program) sponsors CFRI through the CF Scholarship Program ($3,000-$22,000 awards to 40+ scholars annually) and newsletter sponsorship. CREON is a pancreatic enzyme replacement therapy essential for many CF patients.
• Gilead SciencesminorStrategic or Co-development Partner · 1 January 2026Gilead sponsors CFRI programs through the Cayston Access Program, which provides assistance for those uninsured or denied coverage for Cayston (aztreonam) inhalation solution for CF respiratory infections.
• Nestlé Health ScienceminorStrategic or Co-development Partner · 1 January 2026Nestlé Health Science sponsors CFRI through the Live2Thrive program, providing co-pay assistance on pancreatic enzyme prescriptions, free vitamins/supplements, and loyalty rewards for CF patients.
• The Adolphus HotelminorChannel Partner/ Reseller/ Distributor · 1 January 2026The Adolphus Hotel in Dallas, TX hosts the Patrick Nash Fellows Training Symposium November 12-14, 2026. CFRI covers travel, accommodations, and meals for accepted fellows.
• Ameswell HotelminorChannel Partner/ Reseller/ Distributor · 1 January 2026The boutique Ameswell Hotel in Mountain View, CA hosts the 39th National CF Education Conference July 24-26, 2026. CFRI has arranged special block rates for attendees.
• Bruker Biomedical SystemsminorStrategic or Co-development Partner · 1 January 2026Bruker Biomedical Systems sponsors the CF Community Voices podcast series. Bruker provides biomedical research equipment and diagnostics.
• Cystic Fibrosis Engagement NetworkcoreStrategic or Co-development Partner · 1 January 2024CFRI maintains alliances with CF organizational partners in the Cystic Fibrosis Engagement Network, working collectively on advocacy and awareness efforts for the CF community.
• American Thoracic Society Public Advisory RoundtablecoreStrategic or Co-development Partner · 1 January 2024CFRI participates in the American Thoracic Society Public Advisory Roundtable, connecting with other organizations to advance respiratory health research and policy.
• National Rare Disease OrganizationscoreStrategic or Co-development Partner · 1 January 2024CFRI partners with national rare disease organizations for advocacy efforts, including coalition building for state Rare Disease Advisory Councils (RDACs) and engaging on issues impacting the broader rare disease community.
• Disability Rights OrganizationsminorStrategic or Co-development Partner · 1 January 2024CFRI collaborates with disability groups to advocate for issues affecting people with CF, including pharmacy benefit manager reform, copay accumulator bans, and surprise medical billing protections.

Scale indicators15 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• American Lung Association: Major US respiratory health nonprofit funding lung disease research, advocacy, and patient education. Comparable as a respiratory health research and advocacy organization, though operating across all lung conditions rather than specializing in CF.
• EveryLife Foundation for Rare Diseases: National rare disease policy and advocacy organization focused on FDA, NIH, and reimbursement issues. Comparable as a rare disease advocacy nonprofit with similar legislative engagement and coalition-building strategy to CFRI's advocacy arm.
• National Organization for Rare Disorders (NORD): Umbrella rare disease advocacy organization representing ~300 disease-specific patient groups including CF. Comparable as a US rare disease advocacy and patient assistance entity, though operating at the federation level rather than for a single disease.
• Cystic Fibrosis Foundation: The dominant US cystic fibrosis nonprofit operating the accredited CF care center network, national patient registry, and a research investment arm orders of magnitude larger than CFRI. Directly comparable as a CF-focused research, advocacy, and patient support organization, but at vastly greater scale.

Emerging players

• Pulmonary Fibrosis Foundation: Nonprofit supporting patients with pulmonary fibrosis, a progressive respiratory disease with overlapping patient experience to CF (chronic lung disease, therapies, oxygen needs). Comparable as a respiratory disease nonprofit offering patient support, education, and research funding — though addressing a different disease.

Direct peers

• Alpha-1 Foundation: Nonprofit dedicated to Alpha-1 antitrypsin deficiency, a rare genetic lung disease often confused with or comorbid with CF. Highly comparable as a rare genetic respiratory disease nonprofit delivering research funding, patient/family support, education, and advocacy — mirroring CFRI's four-pillar model.
• Boomer Esiason Foundation: CF-focused nonprofit founded by NFL quarterback Boomer Esiason whose son has CF. Provides scholarships, financial hardship grants, and IVF grants for the CF community — overlapping with CFRI's mission and co-sponsoring several of CFRI's programs.
• Claire's Place Foundation: CF-focused nonprofit providing financial and emotional support to CF families, including hospital assistance and extended stays. Comparable as a community-based CF nonprofit delivering direct patient and family support services similar to CFRI's psychosocial programs.
• Emily's Entourage: CF-focused nonprofit accelerating research and drug development for rare CF mutations, particularly those not addressed by existing CFTR modulators. Comparable as a CF-specific research fundraising and patient advocacy organization, though younger and more research-translational in focus.

Others

• American Thoracic Society: Professional medical society for pulmonologists and respiratory researchers, including CF clinicians. CFRI participates in its Public Advisory Roundtable. Comparable as a stakeholder in CF research dissemination and clinical practice, though a professional society rather than patient nonprofit.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/user/cfri2010/playlists
• Xx.com/CFRI_CureCF
• Facebookfacebook.com/CFRI.CureCF
• LinkedInlinkedin.com/company/cystic-fibrosis-research-institute

Revenue estimate

Valuation estimate

Number of profiles

Profiles12 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

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

Frequently asked questions about Cystic Fibrosis Research Institute