Lupus Foundation of America

What Lupus Foundation of America does

The Lupus Foundation of America is a 501(c)(3) charitable nonprofit founded in 1977 and headquartered in Washington, DC, with regional chapter offices including a Wisconsin Chapter in Milwaukee, Texas Gulf Coast Chapter in Houston, and Southeast Region office in Boynton Beach. It serves an estimated 1.5 million Americans affected by lupus, nine out of ten of whom are women, through four mission pillars: research, education, support, and advocacy. All programs are provided free of charge.

The foundation's core technology and content products comprise a national digital ecosystem: the National Resource Center on Lupus as a comprehensive medically reviewed education hub; the RAY® (Research Accelerated by You) Lupus Registry, an international online patient registry that captures patient-reported experiences and connects users with clinical trial navigators; the Lupus Clinical Trial Finder launched in January 2026 with technology partner Carebox to match patients by symptoms, lupus type, location, and preferences; the Expert Series podcast distributed on Spotify, Apple Podcasts, and YouTube; the LupusConnect online peer-support community; and specialized tools such as the HCQ-SAFE shared decision-making utility and the Know Lupus Quiz. Supporting assets include 12 regional chapters, the Gina M. Finzi Memorial Student Summer Fellowship Program running since 1984 with 200+ young scientists funded, the Walk to End Lupus Now national fundraising event series, the National Lupus Advocacy Summit, and the Make Lupus Visible annual awareness campaign.

The organization is funded through individual donations and bequests, corporate sponsorships (Genentech as presenting Walk sponsor, GSK as symposium sponsor), federal research grants secured via advocacy (over $795 million in the past five years, including $151 million cumulative for the CDC National Lupus Patient Registry since 2003 and approximately $75 million cumulative for the DoD Lupus Research Program since its 2017 creation), and trust/academic collaborations. The go-to-market model is community-led and advocacy-driven: a network of 12 regional chapters, national ambassador and volunteer programs, grassroots advocacy activations through the co-led Congressional Lupus Caucus, and multi-channel digital engagement including email, organic social, podcasts, and earned media. The foundation reports approximately $181 million in combined CDC registry and Office of Minority Health congressional investment and $96 million in cumulative DoD Lupus Research Program funding through advocacy.

Name

Lupus Foundation of America

Legal name

Lupus Foundation of America

Website

https://lupus.org

Company type

Private

Founded year

1977

Operating status

Operating

Headcount range

101–250 employees

Short description

The Lupus Foundation of America is a 501(c)(3) nonprofit founded in 1977 that funds research, delivers patient education, runs support services, and conducts advocacy for the estimated 1.5 million Americans affected by lupus, operating a national digital platform (RAY Registry, Clinical Trial Finder, National Resource Center) and a 12-chapter regional network.

Ownership category

akta.pro rank

Product category

Nonprofit Health Organization

NAICS

Voluntary Health Organizations (813212), Social Advocacy Organizations (8133), Religious, Grantmaking, Civic, Professional, and Similar Organizations (813)

SIC

Services-Membership Organizations (8600), Services-Health Services (8000)

akta.pro primary industry

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

akta.pro secondary industries

Global Health Advocacy, Policy & Rights Organizations (HLAJAKAO), Chronic Disease & Health Promotion Program Funding (HLAJALAJ)

Keywords

• Lupus patient advocacy
• Autoimmune disease research
• Chronic illness support services
• Patient registry platform
• Federal research funding

Headquarters

HQ city

Washington

HQ country

United States

HQ region

North America

Offices4 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Contributions: The foundation receives donations from individual donors, including one-time gifts, monthly recurring donations, memorial/honor donations, and bequests.
2. Corporate Partnerships: Corporate sponsorships from pharmaceutical companies and other businesses (e.g., Genentech as presenting sponsor for Walk events, GSK as symposium sponsor).
3. Federal Research Grants: Federal funding from Department of Defense Lupus Research Program, CDC, and Office of Minority Health for lupus research programs.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

The Lupus Foundation of America is a national 501(c)(3) nonprofit that advances research, education, support, and advocacy for people affected by lupus. It operates the National Resource Center on Lupus (online education hub), the RAY Lupus Registry (international patient-reported outcomes registry), the Lupus Clinical Trial Finder (clinical trial matching platform with Carebox), and the Expert Series podcast, alongside regional chapter-based support groups, the Gina M. Finzi Memorial Student Summer Fellowship Program, and Walk to End Lupus Now fundraising events. All programs and services are provided free of charge to patients, caregivers, and healthcare professionals.

Product overview

The Lupus Foundation of America operates as a nonprofit health organization focused on lupus research, education, support, and advocacy. The organization offers a portfolio of programs and services centered around its digital ecosystem: the National Resource Center on Lupus (a comprehensive information hub), the RAY® Lupus Registry (an international online patient registry for research acceleration), The Expert Series podcast (educational content with lupus specialists), and the Lupus Clinical Trial Finder (a clinical trial matching platform). Supporting offerings include Ask a Health Educator, LupusConnect peer support community, HCQ-SAFE© shared decision-making tool, and Know Lupus Quiz. The foundation also runs the Gina M. Finzi Memorial Student Summer Fellowship Program, annual Walk to End Lupus Now events, the Make Lupus Visible awareness campaign, and National Lupus Advocacy Summit. The organization has secured $795 million in federal research funding over five years and funded over 500 grants and fellowship awards.

Differentiator

Problem solved

Functional benefit

Brands

• RAY® Lupus Registry: International online lupus registry where people with lupus can share their unique experiences to accelerate research (Research Accelerated by You)
• National Resource Center on Lupus
• Lupus Clinical Trial Finder

Products and services

• National Resource Center on Lupus Comprehensive online hub providing medically reviewed articles, fact sheets, toolkits, and guidance on lupus diagnosis, treatment, and daily life for patients, caregivers, and healthcare professionals.
• RAY Lupus Registry International online lupus registry where participants share their unique experiences living with lupus to accelerate research, with referral pathways to clinical trial navigators.
• Lupus Clinical Trial Finder Free online platform developed in partnership with Carebox that helps people with lupus find clinical trials by matching them based on symptoms, lupus type, location, and preferences, with access to clinical trial navigators.
• The Expert Series Podcast Educational podcast series featuring leading lupus experts providing insights on treatment, symptoms, mental health, and patient care, distributed via Spotify, Apple Podcasts, and YouTube.
• HCQ-SAFE Shared Decision-Making Tool Interactive web-based shared decision-making tool that helps lupus patients weigh benefits against the rare harms of Hydroxychloroquine.
• Ask a Health Educator Service connecting individuals with trained lupus education experts who help find answers to questions about lupus.
• LupusConnect Online Community Online support community where people with lupus connect, share experiences, and find peer support.
• Gina M. Finzi Memorial Student Summer Fellowship Program 10-week paid, faculty-mentored research placement for undergraduate, graduate, and medical students conducting lupus-focused research.

Quantifiable outcome

• Secured $795 million in federal research funding for lupus in past five years
• +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

Feature2 records

Partnerships

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

• CareboxcoreTechnology or Integration · 23 January 2026Partnership to launch the Lupus Clinical Trial Finder, a free online platform that helps people with lupus find clinical trials by matching them based on symptoms, lupus type, location, and preferences. The platform connects users with clinical trial navigators and provides access to the foundation's RAY Lupus Registry.
• GenentechflagshipGTM or Marketing PartnerPresenting sponsor for Walk to End Lupus Now events, supporting the foundation's flagship fundraising and awareness events nationwide.
• Congressional Lupus CaucuscoreStrategic or Co-development PartnerCo-chaired by Representatives Andrew Garbarino (R-NY) and Bill Keating (D-MA), the caucus champions funding increases for lupus research and awareness programs in Congress.
• Hope Biosciences Research FoundationminorStrategic or Co-development PartnerPartnership to provide lupus patients with treatments and support through the Hope For Lupus initiative.

Scale indicators9 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Cystic Fibrosis Foundation: Disease-specific research-driven nonprofit known for its venture philanthropy model with pharma. Strongly comparable to LFA on the research-grant, clinical-trial-acceleration, and pharma-partnership dimensions.
• American Cancer Society: The largest U.S. voluntary health organization, operating with a similar research-funding, patient-support, and federal-advocacy model. Reference benchmark for what a mature disease-specific national nonprofit looks like at scale.
• National Multiple Sclerosis Society: Large disease-specific voluntary health organization with a similar chapter network, walk fundraising (Walk MS), federal advocacy, and research grant model. Benchmark for scale and operational maturity in disease-specific nonprofits.
• Alzheimer's Association: Major disease-specific voluntary health organization with comparable walk events (Walk to End Alzheimer's), federal advocacy, research grants, and patient/caregiver resources. Demonstrates how a single-disease nonprofit can scale nationally.
• American Diabetes Association: National health nonprofit addressing diabetes with research funding, advocacy, education, and community programs. Closely comparable operating model to LFA in structure and revenue mix.

Direct peers

• Arthritis Foundation: National voluntary health organization addressing arthritis and related autoimmune diseases including lupus. Operates a similar chapter-based, walk-driven, advocacy-led model and directly overlaps on the lupus patient community.
• Lupus Research Alliance: The largest private funder of lupus research in the U.S., focused specifically on finding better treatments and a cure. Closest comparable mission to LFA on the research-funding side, competing for donor mindshare in the lupus category.
• Autoimmune Association: National nonprofit (formerly AARDA) focused on the broad spectrum of autoimmune diseases, including lupus. Comparable advocacy, awareness, and patient-education model and a direct substitute for LFA's autoimmune positioning.

Emerging players

• CreakyJoints: Digital-first arthritis and autoimmune disease patient community and education platform (Global Healthy Living Foundation). Overlaps with LFA on lupus patient support, online community (LupusConnect), and education content.
• National Kidney Foundation: Major U.S. health nonprofit addressing kidney disease, including lupus nephritis — a leading cause of morbidity in lupus patients. Partial overlap on patient population and federal advocacy for kidney-related research funding.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat6 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xtwitter.com/LupusOrg
• YouTubeyoutube.com/c/LupusOrg
• Facebookfacebook.com/LupusFoundationofAmerica
• LinkedInlinkedin.com/company/the-lupus-foundation-of-america
• Instagraminstagram.com/lupusorg

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 Lupus Foundation of America