Alliance for Lupus Research

What Alliance for Lupus Research does

The Lupus Research Alliance (legal name Lupus Research Alliance Inc., formerly Alliance for Lupus Research) is a New York-based 501(c)(3) nonprofit founded in 1999/2000, operating as the world's largest private funder of lupus research with more than $284 million awarded across 650+ grants to date. Its core function is research funding and clinical trial enablement for systemic lupus erythematosus (SLE) and lupus nephritis, delivered through a portfolio of competitive grant programs (Global Team Science Award, Lupus Innovation Award, Mechanistic Clinical Award, Empowering Lupus Research Partnership, Lupus Research Alliance-Genentech Award on Immune Resetting Therapies) and via two wholly owned operating affiliates: Lupus Therapeutics, LLC, which runs the Lupus Clinical Investigators Network (LuCIN) of 50+ academic research centers across North America and is involved in an estimated 25-30% of active lupus clinical trials; and Lupus Ventures, a philanthropic venture fund launched in January 2026 that invests in early-stage companies developing lupus therapies.

The organization operates a community-led, donation-funded model rather than a commercial revenue model. Its Board of Directors covers all administrative and fundraising costs, enabling a 100% pass-through of donations to research programs — a structural claim used as a core donor acquisition proposition. Fundraising channels include Walk with Us to Cure Lupus events, the annual Breaking Through Gala, the Willie Colon Golf Outing, marathons, peer-to-peer giving, and corporate sponsorships from pharmaceutical partners including Genentech (Roche), Johnson & Johnson, UCB, Biogen, Pfizer, and Artiva Biotherapeutics. Primary served segments are academic researchers and scientists (grant recipients), patients and caregivers (community, education, clinical trial access), and pharmaceutical/biotechnology companies (clinical trial partnerships via LuCIN).

Underlying technology assets are centered on clinical trial coordination rather than proprietary software: LuCIN provides the operational backbone for multi-site lupus trials, the PALS peer-to-peer program addresses minority patient underrepresentation in trials, and Lupus Nexus plus the Lupus Landmark Study function as research participation platforms. Strategic emphasis is on emerging modalities such as CAR-T cell therapy, NK cell therapy (AlloNK), monoclonal antibodies (obinutuzumab/Gazyva — FDA-approved for lupus nephritis in partnership with Genentech), and bispecifics (nipocalimab, dapirolizumab pegol). Leadership is provided by President & CEO Albert T. Roy (appointed August 2022, succeeding Kenneth M. Farber).

Name

Alliance for Lupus Research

Legal name

Lupus Research Alliance Inc.

Website

https://lupusresearch.org

Company type

Private

Founded year

2000

Operating status

Operating

Headcount range

11–50 employees

Short description

The Lupus Research Alliance is a 501(c)(3) nonprofit and the world's largest private funder of lupus research, awarding $284M+ across 650+ grants and supporting 25-30% of active lupus clinical trials via its LuCIN network of 50+ academic centers, serving academic researchers, patients, and pharmaceutical partners.

Ownership category

akta.pro rank

Product category

Nonprofit Health Research Funding

NAICS

Voluntary Health Organizations (813212), Grantmaking and Giving Services (8132)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

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

akta.pro secondary industries

Health & Medical Research Grantmaking Foundations (BPAGAKAL), Health Research Funding Agencies (Public/Quasi-Public) (HLAJALAB)

Keywords

• Lupus research funding
• Clinical trial coordination
• Nonprofit health research
• Research grant programs
• Patient advocacy services

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

Grants and research funding distributed to academic researchers, Clinical trial operations and LuCIN site coordination through Lupus Therapeutics, Patient education, community outreach, and awareness programs, Fundraising events (walks, galas, golf outings, marathons), Marketing and donor communications, Administrative and data protection/compliance functions

Revenue model

1. Donations and Fundraising: The organization operates as a nonprofit and raises funds through donations, walks, galas, golf outings, and marathons. The Board of Directors funds all administrative and fundraising costs, ensuring 100% of donations go directly to support lupus research programs.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels9 records

Core offering

The Lupus Research Alliance is the world's largest private funder of lupus research, raising donations and distributing them as competitive research grants to academic investigators studying lupus causes, diagnostics, and treatments. Through its clinical research affiliate Lupus Therapeutics and the Lupus Clinical Investigators Network (LuCIN) of 50+ North American research centers, it partners with pharmaceutical and biotechnology companies to accelerate lupus clinical trials and drug development. The organization operates grant programs, community education and advocacy initiatives, and a philanthropic venture fund (Lupus Ventures) that invests in early-stage lupus therapy companies.

Product overview

The Lupus Research Alliance is a non-profit organization functioning as the world's largest private funder of lupus research. The organization operates as a unified research funding entity rather than a technology product company. Its portfolio includes: the core Lupus Research Alliance entity for overall research funding; Lupus Therapeutics as its clinical research affiliate managing the Lupus Clinical Investigators Network (LuCIN) for accelerating clinical trials; and Lupus Ventures as its philanthropic venture fund investing in early-stage lupus therapy companies. The organization funds various grant programs including the Global Team Science Award, Lupus Innovation Award, Lupus Research Alliance-Genentech Award, Empowering Lupus Research Partnership, and Mechanistic Clinical Award. It also operates the Patient Advocates for Lupus Studies (PALS) peer-to-peer program. Since its Board of Directors funds all administrative costs, 100% of donations support research programs.

Differentiator

Problem solved

Functional benefit

Products and services

• Lupus Ventures Philanthropic venture fund that invests in early-stage companies developing lupus therapies and diagnostics, bridging innovative science and commercial reality. For early-stage biotech companies and life sciences investors.
• Lupus Therapeutics Clinical research affiliate of the Lupus Research Alliance that accelerates drug discovery and diagnostic innovation for lupus patients through clinical trial partnerships with pharmaceutical companies. Manages LuCIN and advisory services.
• Lupus Clinical Investigators Network (LuCIN) Network of 50+ leading academic research centers throughout North America administered by Lupus Therapeutics to accelerate and optimize lupus clinical trials, providing expert investigators and diverse patient populations to pharmaceutical partners.
• Patient Advocates for Lupus Studies (PALS) Peer-to-peer program addressing the underrepresentation of minority patients in lupus clinical trials through early education and trial-specific peer support at research sites.
• Global Team Science Award Research grant program funding multidisciplinary research teams up to $3 million over three years to investigate lupus disease heterogeneity and treatment response, with the goal of identifying biomarkers for personalized lupus treatment.
• Lupus Innovation Award High-risk, high-reward research funding program awarding up to $150,000 annually for two years to fund innovative lupus research projects covering viral triggers, T cell dysfunction, kidney scarring, genetic pathways, blood clotting, and skin inflammation.
• Lupus Research Alliance-Genentech Award on Immune Resetting Therapies for Lupus Co-funded research program with Genentech supporting scientists studying CAR-T cell therapy for lupus treatment, with each recipient receiving $150,000 per year for up to two years.
• Empowering Lupus Research Partnership Collaborative grant program with the Rheumatology Research Foundation committing $1.9 million through Scientist Development Awards (up to $225,000 over three years) and Investigator Awards (up to $500,000 over four years) to support early-career scientists.
• Mechanistic Clinical Award Research funding program supporting studies into underlying causes and personalized treatments for lupus with grants up to $1 million.

Quantifiable outcome

• 100% of donations go directly to lupus research programs
• +4 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Ten partnerships are on record, tiered core and minor.

• Johnson & JohnsoncoreStrategic or Co-development Partner · 3 June 2026Johnson & Johnson's nipocalimab received Fast Track Designation from FDA in March and showed positive Phase 2 data at EULAR 2026. Phase 3 GARDENIA study is enrolling patients with Lupus Therapeutics supporting the trial. Johnson & Johnson also sponsors Walk with Us events.
• Genentech (Roche Group)coreStrategic or Co-development Partner · 26 May 2026Lupus Research Alliance and Genentech co-fund the Lupus Research Alliance-Genentech Award on Immune Resetting Therapies for Lupus, supporting three scientists studying CAR-T cell therapy for lupus treatment at $150,000 per year for up to two years. Genentech also serves as National Walks Sponsor for Walk with Us events and collaborated on Gazyva (obinutuzumab) development which received FDA approval for lupus nephritis.
• SLEuro (European Lupus Society)minorStrategic or Co-development Partner · 24 April 2026Partially funds the SLEuro Mentorship Program providing young physicians with 8-week immersive training at leading European lupus centers. 20 recipients selected for 2026-2027 spanning 16 countries across Europe, Asia, Central America, and North America to address global shortage of specialists.
• Rheumatology Research FoundationcoreStrategic or Co-development Partner · 2 April 2026Committed $1.9 million through the Empowering Lupus Research Partnership to support five early-career scientists advancing lupus and rheumatology research via Scientist Development Awards (up to $225,000 over three years) and Investigator Awards (up to $500,000 over four years). Initiative addresses potential effects of volatile federal funding climate on scientific progress.
• Feinstein Institutes for Medical Research (Northwell Health)coreStrategic or Co-development Partner · 18 March 2026Scientists at Feinstein Institutes, along with international collaborators, launched a first-of-its-kind global clinical study to redefine lupus remission, funded by a $15 million NIH grant and a Lupus Research Alliance Global Team Science Award. Study compares patients in long-term remission to those with active lupus across multiple countries.
• UCB and BiogencoreStrategic or Co-development Partner · 24 September 2024Partnership on PHOENYCS GO Phase 3 trial of dapirolizumab pegol for systemic lupus erythematosus. Trial met primary endpoint showing greater improvement at 48 weeks. Confirmatory PHOENYCS FLY Phase 3 trial is underway. Results published in The Lancet.
• Artiva BiotherapeuticscoreStrategic or Co-development Partner · 14 March 2024Collaboration on Phase 1 trial of AlloNK (AB-101), a non-genetically modified allogeneic NK cell therapy, in combination with anti-CD20 antibodies for patients with active lupus nephritis. Lupus Therapeutics provides advisory services and clinical operations support through LuCIN sites.
• PfizerminorStrategic or Co-development Partner · 6 November 2019Collaborated on study developing a mobile phone-based application to collect patient-reported outcome information from people living with systemic lupus erythematosus, presented at ACR 2019.
• Rilite FoundationminorStrategic or Co-development Partner · 6 November 2019Collaborated on development of a multi-modality imaging approach to evaluate lupus nephritis, presented at ACR 2019 through LuCIN network.
• Janssen (Johnson & Johnson)coreStrategic or Co-development Partner · 1 January 2019Partnership on LOTUS Phase 3 trial testing ustekinumab (Stelara) for lupus through LuCIN network. Although the trial was later discontinued, partnership demonstrates collaborative approach to clinical development. Johnson & Johnson also sponsors Walk with Us events and is developing nipocalimab for SLE.

Scale indicators10 records

Recent moves6 records

Expansion highlights5 records

Emerging players

• Autoimmune Association: Umbrella organization for autoimmune diseases including lupus. Less focused on research funding than LRA but addresses overlapping patient populations and competes for advocacy attention and donor mindshare.
• American Autoimmune Related Diseases Association (AARDA): Coalition-based organization focused on autoimmune disease research and advocacy. Smaller than LRA but competes for federal research funding influence and patient community engagement in the lupus-adjacent autoimmune space.

Direct peers

• Lupus Foundation of America: The other major U.S. voluntary health organization dedicated exclusively to lupus. Directly competes for the same donor base, patient community, and corporate sponsors, though it focuses more on education/advocacy while LRA emphasizes research funding and clinical trial infrastructure.
• Cystic Fibrosis Foundation: Disease-specific voluntary health organization that pioneered the venture philanthropy model with its CF Foundation Therapeutics Lab. Highly comparable to LRA's combination of research grants, clinical trial networks, and now a venture fund (Lupus Ventures).
• ALS Association: Disease-specific voluntary health organization focused on ALS research funding, patient services, and advocacy. Closely comparable in mission structure (single-disease research funder), scale, and reliance on walk-based fundraising.
• JDRF (formerly Juvenile Diabetes Research Foundation): Disease-specific voluntary health organization funding Type 1 diabetes research with comparable structure of research grants, clinical trial support, and corporate partnerships. Often cited as the gold standard for venture philanthropy in disease research.
• Michael J. Fox Foundation for Parkinson's Research: Disease-focused research funder that has pioneered venture philanthropy approaches including direct biotech investment. Highly comparable to LRA in mission specificity, grantmaking scale, and now shared venture fund strategy.
• National Multiple Sclerosis Society: Large voluntary health organization funding MS research with comparable grantmaking programs, walk fundraising (Walk MS), and pharma partnerships for clinical trials. Operates at a larger scale but addresses an autoimmune disease with similar challenges.
• Multiple Myeloma Research Foundation: Disease-specific research funder known for accelerating drug development through partnerships with pharma and biotech. Comparable in scale and mission to LRA, with similar emphasis on clinical trial networks and personalized treatment approaches.

Broad incumbents

• Arthritis Foundation: Large voluntary health organization that funds research across multiple rheumatic diseases including lupus. Broader scope dilutes its lupus-specific focus but it competes for corporate sponsorships and rheumatology research funding.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/alliance4lupus
• YouTubeyoutube.com/user/myalr
• Facebookfacebook.com/allianceforlupusresearch
• LinkedInlinkedin.com/company/lupusresearchalliance
• Instagraminstagram.com/lupusresearchalliance

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Subsidiaries3 records

Funding overview

Funding rounds

Investors

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M&A

Investments1 record

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Frequently asked questions about Alliance for Lupus Research