Foundation For Sarcoidosis Research

What Foundation For Sarcoidosis Research does

The Foundation for Sarcoidosis Research (FSR) is a 501(c)(3) nonprofit organization founded in 2000 by Andrea and Reading Wilson, headquartered in Chicago, Illinois. FSR operates as the leading international patient advocacy and research-funding organization dedicated to sarcoidosis, a rare inflammatory disease characterized by granuloma formation in one or more organs. The organization serves three primary constituencies: (1) sarcoidosis patients and caregivers, with a 46,000+ member global support community spanning all 50 U.S. states and nearly 80 countries; (2) clinicians and healthcare providers, through the FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) network of 40+ leading academic medical centers; and (3) sarcoidosis researchers, via a portfolio of grant programs that have collectively funded over $9 million in disease-specific research since inception.

FSR's core operational assets include the FSR-SARC Patient Registry (Sarcoidosis Advanced Registry for Cures), a longitudinal data collection platform built on Across Healthcare's Matrix technology, capturing patient-reported outcomes, quality-of-life data, organ involvement, and—newly as of December 2025—linked electronic health records. The registry feeds SARConnect, a study notification service matching participants to clinical trials. Complementary programs include the Sarc Fighter Podcast (100,000+ downloads since 2020), virtual support groups, a Patient Navigators Program, the Clinical Studies Network, and clinician education offerings (Journal Club, Case Conference). FSR also operates the "Ignore No More: ACTe Now!" health equity campaign addressing sarcoidosis disparities in Black Americans, who face 2.5x higher disease incidence and more severe outcomes.

The organization's business model is grant- and donation-dependent, with no disclosed revenue. Funding streams include individual donations (one-time, recurring, planned giving/legacy society), corporate sponsorships through a Corporate Advisory Committee (Boehringer Ingelheim, Insmed, KeeNova, Merck), pharmaceutical grant partnerships, and $2,500 annual membership fees from the FSR-GSCA. Free services for patients contrast with this paid institutional layer. The organization employs 1-10 staff but operates an extensive program portfolio, with $450,000 in 2025 fellowship grants and $400,000 announced for 2026 cardiac and pilot grants. Notable recent advocacy achievements include securing a U.S. Department of Labor FMLA clarification providing job-protected leave for clinical trial participants, affecting an estimated 60 million eligible U.S. employees.

Name

Foundation For Sarcoidosis Research

Legal name

Foundation for Sarcoidosis Research

Website

https://stopsarcoidosis.org

Company type

Private

Founded year

2000

Operating status

Operating

Headcount range

1–10 employees

Short description

The Foundation for Sarcoidosis Research is a Chicago-based 501(c)(3) nonprofit that funds sarcoidosis research, operates a global patient registry and 40+ member clinic alliance, supports 46,000+ patients and caregivers, and advocates for rare disease policy change.

Ownership category

akta.pro rank

Product category

Nonprofit Patient Advocacy / Rare Disease Research

NAICS

Voluntary Health Organizations (813212), Religious, Grantmaking, Civic, Professional, and Similar Organizations (813)

SIC

Services-Membership Organizations (8600), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

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

akta.pro secondary industries

Global Health Research, Evidence & Technical Assistance Organizations (HLAJAKAN), Clinical Trial Site Operations & Study Coordination (HLAGACAE)

Keywords

• Rare disease research
• Patient advocacy services
• Patient registry platforms
• Nonprofit healthcare support
• Clinical trial matching

Headquarters

HQ city

Chicago

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: One-time and monthly gifts from individuals, including tribute gifts in honor or memory of loved ones, and matching gift programs through employers.
2. Corporate Sponsorships: Support from pharmaceutical companies and corporations through Corporate Advisory Committee membership and sponsorship opportunities.
3. Planned Giving: Legacy Society planned giving program for estate planning gifts to ensure long-term funding for sarcoidosis research.
4. Grant Funding: Foundation grants and awards distributed to researchers, funded through donor contributions and pharmaceutical partnerships.
5. GSCA Membership Fees: Annual membership fees of $2,500 for the Global Sarcoidosis Clinic Alliance program for participating clinics and hospitals.

Pricing tiers

Go-to-market motion3 records

Distribution channels3 records

Marketing channels8 records

Core offering

The Foundation for Sarcoidosis Research (FSR) is a 501(c)(3) nonprofit that funds and accelerates sarcoidosis research, operates the FSR-SARC Patient Registry on the Across Healthcare Matrix platform, and runs the FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) — a paid membership network of 40+ academic medical centers. The organization also delivers patient support programs (virtual support groups, patient navigators), clinician education, advocacy (FMLA clarification for clinical trial participants), and grant funding for sarcoidosis investigators.

Product overview

The Foundation for Sarcoidosis Research operates as a nonprofit patient advocacy organization offering a portfolio of interconnected programs and services. The core offering centers on the FSR-SARC Patient Registry, a longitudinal patient data collection platform enabling participants to share health records and survey responses to advance research. This registry powers the SARConnect notification service connecting patients with clinical trial opportunities. The organization maintains the FSR Global Sarcoidosis Clinic Alliance, a network of member healthcare institutions providing evidence-based care. Patient-facing services include the FSR Sarc Fighter Podcast (educational content), virtual support groups, and the Patient Navigators Program providing peer support. Clinician-facing offerings encompass the Journal Club, Case Conference, and Clinical Studies Network. Research funding programs include Fellowship, Pilot, Cardiac Sarcoidosis, and Established Investigator Grants. Advocacy initiatives include Champions for Change-PTO Initiative and the Ignore No More-ACTe Now! health equity campaign. Additional services include Team KISS fundraising, a Video Library, Provider Directory, Wellness Series, and guest blog storytelling platform.

Differentiator

Problem solved

Functional benefit

Brands

• FSR Global Sarcoidosis Clinic Alliance: A member program consisting of clinics, hospitals, and individual providers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis.
• FSR-SARC Patient Registry
• Sarc Fighter Podcast
• Ignore No More: ACTe Now!
• ACTe Now 2: Roadmap 2 Progress

Products and services

• FSR-SARC Patient Registry The Sarcoidosis Advanced Registry for Cures — a longitudinal patient registry capturing patient experience, disease impact on quality of life, organ involvement, medications, and social/economic burden. Participants can link electronic health records and complete surveys over time, with data used to advance sarcoidosis research and drug development.
• FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) A paid membership network ($2,500 annual fee) of 40+ academic medical centers, hospitals, and individual providers committed to evidence-based, multidisciplinary sarcoidosis care and research collaboration. Includes networking, research acceleration, continuing education, and patient referral resources.
• FSR Research Grant Programs A suite of research funding programs including Fellowship Grants ($450,000 awarded to 3 recipients in 2025), Pilot Grants, Cardiac Sarcoidosis Grants, and Established Investigator Grants supporting academic and clinical sarcoidosis researchers.
• Champions for Change – PTO Initiative Advocacy initiative under the Coalition to Transform Clinical Trial Engagement, partnering with employers to provide paid time off (PTO) for employees participating in clinical trials, including securing FMLA clarification from the U.S. Department of Labor.
• Ignore No More: ACTe Now! Campaign

Quantifiable outcome

• Over $9 million in sarcoidosis-specific research funded since 2000
• +2 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration1 record

Feature2 records

Partnerships

18 partnerships are on record, tiered core and supporting.

• Hospital Clínic de BarcelonacoreStrategic or Co-development Partner · 16 January 2026First international member of FSR Global Sarcoidosis Clinic Alliance, announced January 2026, expanding the alliance's global reach.
• Boehringer IngelheimcoreOthersCorporate Advisory Committee member providing support for FSR initiatives and research programs. Boehringer Ingelheim collaborates with FSR on advancing sarcoidosis research and patient resources.
• InsmedcoreOthersCorporate Advisory Committee member supporting FSR's mission. Insmed is focused on rare pulmonary diseases including nontuberculous mycobacterial lung disease.
• KeeNovasupportingOthersCorporate Advisory Committee member supporting FSR initiatives.
• MerckcoreOthersCorporate Advisory Committee member providing pharmaceutical industry partnership for FSR research and patient programs.
• Cedars-Sinai Medical CentercoreStrategic or Co-development PartnerFounding member of FSR Global Sarcoidosis Clinic Alliance. Cedars-Sinai provides multidisciplinary sarcoidosis care and participates in research collaboration through the alliance.
• Cleveland CliniccoreStrategic or Co-development PartnerFounding member of FSR Global Sarcoidosis Clinic Alliance. Cleveland Clinic operates a multidisciplinary sarcoidosis program participating in alliance research initiatives.
• Johns Hopkins UniversitycoreStrategic or Co-development PartnerFounding member of FSR Global Sarcoidosis Clinic Alliance. Johns Hopkins provides sarcoidosis expertise and research collaboration through its pulmonary and cardiac sarcoidosis programs.
• National Jewish HealthcoreStrategic or Co-development PartnerFounding member of FSR Global Sarcoidosis Clinic Alliance. National Jewish Health is a leading center for sarcoidosis research and patient care.
• University of PennsylvaniacoreStrategic or Co-development PartnerFounding member of FSR Global Sarcoidosis Clinic Alliance. Penn's sarcoidosis clinic is recognized by WASOG and FSR as a Center of Excellence.
• American Thoracic Society (ATS)coreStrategic or Co-development PartnerLong-standing collaboration with ATS for research initiatives. FSR and ATS partnered to welcome Dr. Matt Craig to lead strategic research initiatives, and FSR regularly participates in ATS International Conferences.
• Across HealthcarecoreTechnology or IntegrationTechnology partner providing the Matrix platform for FSR's patient registry, enabling secure collection and storage of patient health data and survey responses.
• EveryLife Foundation for Rare DiseasessupportingGTM or Marketing PartnerAwarding body for the RareVoice Awards. EveryLife Foundation recognizes FSR's advocacy work through this prestigious rare disease advocacy award.
• Global GenessupportingStrategic or Co-development PartnerFSR is a RARE Foundation Alliance member, connecting with other rare disease organizations for collective advocacy and resource sharing.
• National Organization for Rare Diseases (NORD)supportingStrategic or Co-development PartnerNORD membership supporting FSR's rare disease advocacy and resource sharing initiatives.
• XentriasupportingOthersFeatured clinical trial partner for XTMAB-16 Phase 2 sarcoidosis study listed on FSR's clinical trial participation page.
• MolecuresupportingOthersFeatured clinical trial partner for the KITE Study Phase 2 sarcoidosis research listed on FSR's clinical trial participation page.
• Avalyn PharmasupportingOthersFeatured clinical trial partner for the MIST Study Phase 2b sarcoidosis research listed on FSR's clinical trial participation page.

Scale indicators6 records

Direct peers

• Cystic Fibrosis Foundation: Disease-specific nonprofit that built the modern template for rare-disease research funding, patient registry, clinic network, and pharma partnerships. Most directly comparable in operating model to FSR's grantmaking + clinic alliance + advocacy approach.
• Pulmonary Fibrosis Foundation: Similar-sized rare lung-disease nonprofit operating a patient registry, clinic network (PFF Care Center Network), research grants, and advocacy. Comparable mission profile and stakeholder set to FSR's pulmonary sarcoidosis focus.
• Lymphoma Research Foundation: Demonstrably scaled disease-specific nonprofit with research grants, patient education, and an active foundation. Highly comparable operating model to FSR in grantmaking, fundraising, and patient community engagement.
• Multiple Myeloma Research Foundation: Disease-specific cancer nonprofit with strong pharma partnerships, research funding, and patient community. Frequently cited as a model for disease-focused foundations of FSR's profile and ambition.
• GO2 Foundation for Lung Cancer: Disease-specific lung nonprofit funding research, running patient support programs, and engaging in federal advocacy. Comparable structure and stakeholder mix to FSR's respiratory disease focus.

Broad incumbents

• American Lung Association: Large, established lung-health nonprofit with overlapping respiratory disease research funding, advocacy, and patient education. Much broader mandate, but competes for the same donor and policy attention as FSR.
• National Organization for Rare Disorders (NORD): Umbrella rare-disease organization providing advocacy, research grants, and policy work. FSR is a NORD member; NORD represents both a peer and a partner organization with substantially greater scale.
• EveryLife Foundation for Rare Diseases: Federal advocacy and policy organization for rare diseases that awarded FSR the 2025 RareVoice Award. Operates in the same advocacy/policy space as FSR's Champions for Change and FMLA initiatives.
• Global Genes: Rare-disease alliance and advocacy organization with RARE Foundation Alliance program that FSR belongs to. Comparable in advocacy and patient community focus, but operates across many diseases rather than sarcoidosis alone.

Others

• American Thoracic Society: Professional medical society whose members are FSR's clinician audience and which has hosted FSR's strategic research initiatives. Acts as a partner and convening body rather than a direct competitor.

Market position

Strengths5 records

Weaknesses5 records

Key highlights7 records

Customer concentration

• Xx.com/StopSarcoidosis
• YouTubeyoutube.com/user/StopSarcoidosis
• Facebookfacebook.com/StopSarcoidosis
• LinkedInlinkedin.com/groups/Foundation-Sarcoidosis-Research-4021527
• Instagraminstagram.com/stopsarcoidosis

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Foundation For Sarcoidosis Research