Lupus Foundation of America Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
LUPUS FOUNDATION OF AMERICA, INC. (THE FOUNDATION) IS DEDICATED TO IMPROVING THE QUALITY OF LIFE FOR ALL PEOPLE AFFECTED BY LUPUS THROUGH PROGRAMS OF RESEARCH, EDUCATION, SUPPORT, AND ADVOCACY.
- Income
- $15.0 million
- Spending
- $16.7 million
- Spent on programs
- 75%
- Reserves
- 0.7 months of spending
- Largest source of income
- donations and private grants, 72%
- Employees
- 76
- Volunteers
- 1,075
- Highest pay
- $340,899, ceo; vp, marketing & communications
Source: Form 990 for the year ending September 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Weak: 38 out of 100. Higher than 6% of charities in its peer group (diseases, $10m to $100m).
Reserves
4 of 35Spendable reserves would cover 0.7 months of spending.
Debt
5 of 20It owes 58% of what it owns.
Living within its means
4 of 15Spending exceeded income by 12% of income.
Income trend
10 of 15Income fell 3% on the year before.
Spending floor
15 of 1575% of spending went to programs and raising each dollar of donations cost 21 cents.
Source: Form 990 for the year ending September 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 35% of charities in its peer group (diseases, $10m to $100m).
Independent board
25 of 2519 of 19 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending September 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (5)
- $5.0 million spent. PUBLIC INFORMATION AND EDUCATION:THE FOUNDATION STRENGTHENED ITS ROLE AS THE LEADING SOURCE OF LUPUS INFORMATION. THE LUPUS.ORG WEBSITE REACHED MORE THAN 9.8 MILLION ANNUAL VIEWS, SUPPORTED BY HOMEPAGE OPTIMIZATION IMPROVEMENTS AND THE INTEGRATION OF THE DIGITAL KNOW LUPUS QUIZ TO ENHANCE ENGAGEMENT DURING LUPUS AWARENESS MONTH (LAM) AND YEAR-ROUND. SOCIAL MEDIA FOLLOWING GREW TO MORE THAN 450,000 COMBINED FOLLOWERS ACROSS PLATFORMS, SUPPORTED BY TARGETED CAMPAIGNS, INCLUDING "SPOTLIGHT SERIES" INITIATIVES HIGHLIGHTING DISPARITIES AND THE UNIQUE IMPACT OF LUPUS ACROSS POPULATIONS.LUPUS AWARENESS MONTH CONTINUED UNDER THE THEME MAKE LUPUS VISIBLE, FEATURING EDUCATIONAL RESOURCES, PERSONAL STORIES, VIDEOS, ADVOCACY EVENTS, AND PROMOTIONAL EFFORTS TIED TO MAJOR FUNDRAISING INITIATIVES AND THE NATIONAL LUPUS ADVOCACY SUMMIT. AN OMNIBUS AWARENESS SURVEY SHOWED 53% OF U.S. ADULTS STILL REPORTED LIMITED OR NO KNOWLEDGE OF THE DISEASE, UNDERSCORING THE NEED FOR CONTINUED EDUCATION.GLOBALLY, THE FOUNDATION LED WORLD LUPUS DAY ON MAY 10 THROUGH ITS WORLD LUPUS FEDERATION (WLF), EXECUTING AN INTERNATIONAL MAKE LUPUS VISIBLE CAMPAIGN. IN 2025, THE FEDERATION MARKED ITS 10TH ANNIVERSARY WITH A COMPREHENSIVE COMMUNICATIONS CAMPAIGN, NEW LOGO, AND REDESIGNED WEBSITE TO CELEBRATE A DECADE OF IMPACT. THE WORLD LUPUS FEDERATION, NOW COMPRISING APPROXIMATELY 250 ORGANIZATIONS ACROSS 75 COUNTRIES, COMPLETED KEY INITIATIVES IDENTIFIED IN ITS NEEDS ASSESSMENT, INCLUDING DEVELOPMENT OF A SPANISH-LANGUAGE "UNDERSTANDING LUPUS" FACT SHEET FOR INTERNATIONAL PARTNERS AND A GLOBAL WEBINAR ON CREATING PEER-LED SUPPORT GROUPS.
- $4.5 million spent. PATIENT EDUCATION AND SUPPORT:THE FOUNDATION'S NATIONAL RESOURCE CENTER ON LUPUS (NRCL) REMAINED CENTRAL TO PATIENT EDUCATION, REACHING NEARLY 2 MILLION USERS AND GENERATING 3.3 MILLION SESSIONS IN 2025 WITH A 65% ENGAGEMENT RATE. THE FOUNDATION UPDATED OR CREATED NEW 24 MEDICALLY-REVIEWED ENGLISH RESOURCES AND 20 SPANISH RESOURCES, WITH 88% OF MATERIALS NOW AVAILABLE BILINGUALLY. NEW BLOG CONTENT ADDRESSED MENTAL HEALTH, LUPUS NEPHRITIS, AND LIFESTYLE STRATEGIES.THE FOUNDATION HOSTED 29 LUPUS & YOU EMPOWERMENT CONFERENCES, ATTRACTING MORE THAN 1,500 IN-PERSON ATTENDEES, 41% OF WHOM WERE NEW TO THE ORGANIZATION. CONFERENCES PROVIDED EDUCATION, SUPPORT, AND OPPORTUNITIES FOR RESEARCH ENGAGEMENT. ADDITIONALLY, THE LUPUS & YOU: ANSWERS, ADVOCACY, ACTION WEBINAR SERIES REACHED NEARLY 7,900 INDIVIDUALS THROUGH LIVE AND RECORDED SESSIONS. SELF-MANAGEMENT EDUCATION CONTINUED TO GROW THROUGH THE SELF (STRATEGIES TO EMBRACE LIVING WITH LUPUS FEARLESSLY) PROGRAM, NOW DELIVERED VIA MOBILE APP. IN 2025, MORE THAN 5,200 INDIVIDUALS REGISTERED FOR THE APP, WITH 1,200 MONTHLY ACTIVE USERS. COMPLEMENTARY TOOLS INCLUDED A PEER SELF-MANAGEMENT PILOT PROGRAM, PRINTED GUIDES, AND A HEALTH CARE PROFESSIONAL REFERRAL TOOLKIT.THE TAKE CHARGE/TOME CONTROL EMAIL SERIES GAINED 842 NEW SUBSCRIBERS IN FY2025, REACHING MORE THAN 17,000 SUBSCRIBERS OVERALL, WITH ABOUT 20% SELECTING SPANISH-LANGUAGE CONTENT. THE EXPERT SERIES PODCAST ADDED NEW EPISODES ADDRESSING FIBROMYALGIA, MENOPAUSE, AND LUPUS IN MEN.COMMUNITY-LEVEL OUTREACH INCLUDED PARTNERSHIPS WITH 20 LIBRARIES, LOCAL EVENTS REACHING NEARLY 2,000 ATTENDEES, AND THE BE FIERCE. TAKE CONTROL. AWARENESS CAMPAIGN, WHICH GENERATED 16.9 MILLION AD VIEWS AND MORE THAN 56,000 WEBSITE VISITS. HEALTH EDUCATION SPECIALISTS RESPONDED TO 2,887 INQUIRIES FROM INDIVIDUALS ACROSS 46 STATES, THREE U.S. TERRITORIES, AND MORE THAN 65 COUNTRIES. TRANSLATION SERVICES EXPANDED CULTURALLY APPROPRIATE MATERIALS AND PROGRAM ACCESS.THE FOUNDATION UPDATED 42 STATE AND LOCAL 211 SYSTEMS WITH LUPUS RESOURCES AND LAUNCHED A CONTINUING NURSING EDUCATION COURSE ACCESSED BY MORE THAN 100 NURSES SHORTLY AFTER RELEASE. THE COMMUNITY HEALTH WORKER RESOURCE HUB EXPANDED WITH UPDATED MODULES AND A SPANISH-LANGUAGE PROMOTORES DE SALUD HUB. OUTREACH EFFORTS REACHED HUNDREDS OF FRONTLINE HEALTH WORKERS, AND SPECIALIZED WORKSHOPS SUPPORTED CULTURALLY RELEVANT EDUCATION IN NATIVE AMERICAN COMMUNITIES.ADDITIONAL PROFESSIONAL ENGAGEMENT INCLUDED DEVELOPMENT OF PROVIDER REFERRAL TOOLKITS, UPDATED CLINICIAN-FOCUSED CONTENT, EDUCATIONAL VIDEOS, CONFERENCE PRESENTATIONS, AND COLLABORATIVE PARTNERSHIPS TO STRENGTHEN REFERRAL PATHWAYS AND IMPROVE LUPUS CARE DELIVERY.
- $2.3 million spent. PROFESSIONAL RELATIONS AND EDUCATION:THE FOUNDATION'S ADVOCACY EFFORTS DELIVERED HISTORIC FUNDING GAINS. DURING THE NATIONAL LUPUS ADVOCACY SUMMIT, MORE THAN 350 ADVOCATES CONDUCTED NEARLY 200 MEETINGS ON CAPITOL HILL. THESE EFFORTS CONTRIBUTED TO SECURING $27 MILLION IN LUPUS-SPECIFIC FEDERAL FUNDING FOR FY2026 THE HIGHEST EVER APPROVED IN A SINGLE YEAR. FUNDING ALLOCATIONS INCLUDED:- $14 MILLION FOR THE CDC'S NATIONAL LUPUS PATIENT REGISTRY- $10 MILLION FOR THE DEPARTMENT OF DEFENSE LUPUS RESEARCH PROGRAM- $3 MILLION FOR THE OFFICE OF MINORITY HEALTH'S LUPUS TRAINING AND OUTREACH INITIATIVES- $49.7 BILLION OVERALL FOR THE NATIONAL INSTITUTES OF HEALTH, THE WORLD'S LARGEST PUBLIC FUNDER OF LUPUS RESEARCHTHE FOUNDATION ALSO ADVANCED PATIENT-CENTERED DRUG DEVELOPMENT BY CONTRIBUTING TO FDA PATIENT FOCUSED DRUG DEVELOPMENT GUIDANCE, AND IT ENGAGED IN FEDERAL AND STATE ADVOCACY TO ELIMINATE RESTRICTIVE INSURANCE PRACTICES SUCH AS STEP THERAPY AND CO-PAY ACCUMULATORS. THE FOUNDATION ALSO MOBILIZED A NETWORK OF MORE THAN 40,000 GRASSROOTS ADVOCATES NATIONWIDE.THROUGH LEADERSHIP OF THE MAPRX COALITION, REPRESENTING MORE THAN 60 NATIONAL PATIENT ORGANIZATIONS, THE FOUNDATION WORKED TO PROTECT MEDICARE PART D BENEFITS FOR 44 MILLION AMERICANS. EFFORTS INCLUDED CONGRESSIONAL BRIEFINGS AND ENGAGEMENT WITH THE CENTERS FOR MEDICARE AND MEDICAID SERVICES REGARDING IMPLEMENTATION OF THE MEDICARE PRESCRIPTION PAYMENT PLAN.
- $408,272 spent. NETWORK SUPPORT AND SERVICES:THE FOUNDATION'S NATIONAL NETWORK OF CHAPTERS, AMBASSADORS, AND SUPPORT GROUPS CONTINUED TO EXPAND. MORE THAN 200 TRAINED NATIONAL AMBASSADORS PROVIDED PEER EDUCATION AND OUTREACH. THE ORGANIZATION SUPPORTED MORE THAN 45 NATIONAL SUPPORT GROUPS WITH EXPANDED OFFERINGS FOR MEN, YOUTH UNDER 25, HISPANIC/LATINO COMMUNITIES, ASIAN COMMUNITIES, CAREGIVERS, AND BLACK/AFRICAN AMERICAN WOMEN. BOTH IN-PERSON AND VIRTUAL FORMATS INCREASED ACCESSIBILITY. SIX NEW NATIONAL AND EIGHT NEW REGIONAL SUPPORT GROUPS LAUNCHED, AND 142 FACILITATORS COMPLETED TRAINING, WITH 94% REPORTING READINESS TO LEAD. MORE THAN 90% OF PARTICIPANTS REPORTED INCREASED SUPPORT, IMPROVED KNOWLEDGE, AND REDUCED ISOLATION. THE LUPUSCONNECT ONLINE COMMUNITY GREW TO 27,416 MEMBERS.COMMUNITY FUNDRAISING AND ENGAGEMENT REMAINED STRONG. THE FOUNDATION HELD 29 WALK TO END LUPUS NOW EVENTS NATIONWIDE AND A VIRTUAL CELEBRATION FOR BROADER PARTICIPATION. THE VIRTUAL 6 CHALLENGE PROVIDED FLEXIBLE ENGAGEMENT OPPORTUNITIES. GAME ON! TO END LUPUS, A THREE-DAY LIVESTREAM FUNDRAISING EVENT, ENGAGED MORE THAN 188 CONTENT CREATORS AND SURPASSED THE $1 MILLION MILESTONE IN CUMULATIVE FUNDRAISING.
- $403,757 spent. RESEARCH:RECENT THERAPEUTIC ADVANCES HAVE SIGNIFICANTLY IMPROVED OUTCOMES FOR PEOPLE WITH LUPUS, WITH APPROXIMATELY 97 PERCENT OF PATIENTS NOW LIVING AT LEAST FIVE YEARS AFTER DIAGNOSIS. DESPITE THIS PROGRESS, CONTINUED RESEARCH IS ESSENTIAL TO ENHANCE QUALITY OF LIFE AND DEEPEN UNDERSTANDING OF THE DISEASE. THE LUPUS FOUNDATION OF AMERICA ANCHORS ITS RESEARCH EFFORTS IN THREE INTERCONNECTED PRIORITIES: ADVANCING CLINICAL CARE, EXPANDING EQUITABLE ACCESS TO CARE, AND ACCELERATING DRUG DEVELOPMENT. A CORNERSTONE INITIATIVE IS THE ADDRESSING LUPUS PILLARS FOR HEALTH ADVANCEMENT (ALPHA) PROJECT, A GLOBAL, MULTI-PHASE EFFORT TO IDENTIFY URGENT UNMET NEEDS IN LUPUS CARE. IN 2025, ALPHA EXPANDED ITS FOCUS TO PATIENT-PROVIDER COMMUNICATION AND BARRIERS TO HIGH-QUALITY CARE. THE TEAM CONDUCTED A REVIEW OF MORE THAN 2,300 ARTICLES, DEVELOPED A DECISION-MAKING FRAMEWORK, AND HELD FOCUS GROUPS WITH INDIVIDUALS LIVING WITH LUPUS TO BETTER UNDERSTAND TREATMENT CHALLENGES. THESE EFFORTS LED TO THE CREATION OF A PROTOTYPE SHARED DECISION-MAKING TOOLAVAILABLE IN PAPER AND MOBILE FORMATSTO HELP PATIENTS BETTER UNDERSTAND TREATMENT OPTIONS AND COLLABORATE EFFECTIVELY WITH PROVIDERS.A ROADMAP IDENTIFYING U.S. "RHEUMATOLOGY DESERTS" WAS DEVELOPED TO IMPROVE ACCESS TO TIMELY DIAGNOSIS AND CARE. ADDITIONALLY, A CONSENSUS-BASED MANUSCRIPT OUTLINING SOLUTIONS TO RACIAL AND ETHNIC DISPARITIES WAS PUBLISHED IN ARTHRITIS CARE AND RESEARCH AND FEATURED IN HEALIO MAGAZINE.THE FOUNDATION ALSO FUNDS FELLOWSHIPS AND EARLY-CAREER DEVELOPMENT GRANTS TO ENSURE TRAINING SUPPORT FOR LUPUS RESEARCHERS. IT PARTNERS WITH LUPUS CANADA TO ADMINISTER THE CATALYST GRANT AND ACTIVELY PURSUES FEDERAL, STATE, AND INDUSTRY FUNDING TO STRENGTHEN LUPUS RESEARCH PIPELINES. RESEARCH INVESTMENTS INCLUDE SUPPORT FOR A MULTI-YEAR STUDY OF MESENCHYMAL STROMAL CELLS AS A POTENTIAL LUPUS TREATMENT, LED BY THE MEDICAL UNIVERSITY OF SOUTH CAROLINA IN PARTNERSHIP WITH THE NATIONAL INSTITUTE FOR ALLERGY AND INFECTIOUS DISEASES. ALL PARTICIPANTS HAVE COMPLETED THE STUDY, AND RESULTS ARE EXPECTED IN 2026. ADDITIONALLY, THE LFA-FUNDED CARE LUPUS STUDY, PART OF THE PREDICT AND PREVENT LUPUS PROGRAM, HAS MADE SIGNIFICANT PROGRESS IN IDENTIFYING FIRST-DEGREE RELATIVES AT RISK OF DEVELOPING LUPUS.THE FOUNDATION ALSO SUPPORTS THE SYSTEMIC LUPUS ERYTHEMATOSUS COLLABORATING CLINICS (SLICC) IN UPDATING THE FDA-ACCEPTED SLICC DAMAGE INDEX, PARTICIPATES IN LUPUS ABC TO IMPROVE CLINICAL TRIAL OUTCOME MEASURES, AND PARTNERS IN THE TREATMENT RESPONSE MEASURE FOR SLE (TRM-SLE) PROJECT TO ELEVATE THE PATIENT VOICE.THE RAY REGISTRY CONTINUES TO EXPAND AS A VITAL PATIENT DATA PLATFORM. SINCE OCTOBER 2024, 473 NEW PARTICIPANTS ENROLLED, BRINGING TOTAL ENROLLMENT TO 7,163. RECRUITMENT EFFORTS HAVE INCREASED REPRESENTATION AMONG BLACK/AFRICAN AMERICAN PARTICIPANTS AND OTHER RACIAL AND ETHNIC GROUPS. MOST NEW ENROLLEES HAVE SYSTEMIC LUPUS ERYTHEMATOSUS (SLE), WITH A MEDIAN AGE OF 45. IN 2025, THE RAY PLATFORM WAS UPGRADED TO ENHANCE COMMUNICATION, EXPAND GLOBAL REACH, AND IMPROVE PATIENT-REPORTED DATA COLLECTION TO ACCELERATE RESEARCH AND CLINICAL TRIAL PARTICIPATION.
Source: Form 990 for the year ending September 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending September 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since May 1978.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.
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