The LAM Foundation
The LAM Foundation is a US-based 501(c)(3) non-profit founded in 1995 that drives research, patient support, and advocacy for women with lymphangioleiomyomatosis (LAM), a rare lung disease, operating a global network of 77+ LAM clinics and administering research grants and data infrastructure including the LAM Cell Atlas.
- Company typePrivate
- Founded1995
- HeadquartersCincinnati, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What The LAM Foundation does
The LAM Foundation is a US-based 501(c)(3) patient advocacy and research funding non-profit founded in 1995 in Cincinnati, Ohio, focused exclusively on lymphangioleiomyomatosis (LAM) — a rare, progressive lung disease that strikes women almost exclusively and has no known cure. The organization serves three primary constituencies: women diagnosed with LAM (including sporadic LAM and TSC-LAM patients) who require support, education, and access to specialized care; healthcare providers and LAM Clinic directors needing updated guidelines and research resources; and LAM researchers who require funding, biospecimens, and data infrastructure. Its operating geographies span North America, Europe, Asia, South America, Africa, and Oceania via a global network of 41 US and 36 international LAM clinics.
The Foundation's technical and programmatic portfolio centers on research acceleration and patient support rather than commercial products. Core technology assets include the LAM Cell Atlas — a web-based single-cell RNA sequencing data portal covering lung, uterus, and kidney tissues from LAM patients — and the LAM Tissue Collection Program, run in partnership with the National Disease Research Interchange (NDRI), which provides researchers with prospective surgical tissue samples and corresponding medical histories. The Foundation administers a competitive Research Grant Program (Pilot-Feasibility Awards up to $50,000; Clinical Research Awards; Patient Quality of Life Awards up to $25,000) via ProposalCentral, supports a VEGF-D diagnostic biomarker service at Cincinnati Children's Hospital Medical Center, runs the LAM-PREP patient-driven research priority-setting initiative, and operates the TEN Early Career Researcher Network. Annual community touchpoints include the LAMposium and International LAM Research Conference (nearly 400 attendees), Worldwide LAM Awareness Month each June, and Rare Disease Week advocacy on Capitol Hill. Over 30+ years the Foundation has raised over $38M, directed over $19M to research which has catalyzed an estimated $90M in subsequent funding, and drove the MILES clinical trial that led to FDA approval of sirolimus (Rapamune) in May 2015 — the first effective treatment for LAM.
The Foundation's business model is non-commercial: revenue mechanics consist entirely of donations, grants, fundraising events, and merchandise sales supporting patient support, research funding, and advocacy programs. It carries NORD and National Health Council accreditation (since 2002), is governed by a Board of Directors chaired by Dr. Greg Downey (National Jewish Health), and is led by Executive Director Patti Tuomey, Ed.D. and Scientific Director Dr. Vera Krymskaya (appointed 2024, interim since July 2023). The organization has no parent company, no subsidiaries, and no institutional or private-equity investment; ownership and control rest with the Board.
The LAM Foundation firmographics
Firmographics- Name
- The LAM Foundation
- Legal name
- The LAM Foundation
- Website
- https://thelamfoundation.org
- Company type
- Private
- Founded year
- 1995
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- The LAM Foundation is a US-based 501(c)(3) non-profit founded in 1995 that drives research, patient support, and advocacy for women with lymphangioleiomyomatosis (LAM), a rare lung disease, operating a global network of 77+ LAM clinics and administering research grants and data infrastructure including the LAM Cell Atlas.
- Ownership category
- akta.pro rank
The LAM Foundation industry classification
Industry- Product category
- Rare Disease Patient Advocacy and Research Funding
- NAICS
- Voluntary Health Organizations (813212), Social Advocacy Organizations (8133), Other Individual and Family Services (624190), Blood and Organ Banks (621991)
- SIC
- Services-Commercial Physical & Biological Research (8731), Services-Medical Laboratories (8071)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
- akta.pro secondary industries
- Health & Medical Research Grantmaking Foundations (BPAGAKAL), Cell & Tissue Banking (biobanking, cord blood/tissue) (HLAAAGAE), Community Health & Prevention Program Funding (HLAJALAF)
Keywords
Where The LAM Foundation is headquartered
LocationHeadquarters
- HQ city
- Cincinnati
- HQ country
- United States
- HQ region
- North America
Markets served
The LAM Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Others, Operations, Marketing or Sales, Technology or R&D
Distribution channels4 records
Marketing channels10 records
The LAM Foundation product offering
Product offeringCore offering
The LAM Foundation is a patient-advocacy and research-funding non-profit dedicated to lymphangioleiomyomatosis (LAM), a rare progressive lung disease primarily affecting women. It funds LAM research through a peer-reviewed grant program, operates a global LAM Clinic and Research Network, provides patient education and support services, and runs disease-specific data and biospecimen resources (the LAM Cell Atlas and a tissue donation program in partnership with NDRI).
Product overview
The LAM Foundation is a patient advocacy and research non-profit organization (not a technology product company) offering a portfolio of programs and services to support women with Lymphangioleiomyomatosis (LAM). Core offerings include the LAM Cell Atlas web portal for single-cell omics data access, a Tissue Donation Program through NDRI, a competitive Research Grant Program administered via ProposalCentral, the LAM Clinic and Research Network spanning 40+ US and 36 international clinics, the VEGF-D diagnostic biomarker test service, and the LAM-PREP patient priority-setting initiative. The Foundation also organizes the annual LAMposium conference and Worldwide LAM Awareness Month campaigns. All offerings are non-commercial support services for patients, researchers, and clinicians rather than a commercial software product.
Differentiator
Problem solved
Functional benefit
Brands
- LAMposium: The annual International LAM Research Conference and LAMposium is the largest LAM conference in the world, attracting nearly 400 people representing the global LAM community.
- WLAM (Worldwide LAM Awareness Month)
- LAM Foundation Grant Program
- LAM Cell Atlas (LCA)
- TEN (The Early Career Researcher Network)
Products and services
- LAM Cell Atlas (LCA) Web-based portal providing integrated single-cell RNA sequencing data from lung, uterus, and kidney tissues of LAM patients, with user-friendly graphical interfaces for searching, visualizing, and reanalyzing data without programming requirements. Built for LAM researchers and translational scientists.
- LAM Tissue Collection Program (with NDRI) Collaborative initiative with the National Disease Research Interchange (NDRI) enabling researchers to access surgical tissue samples and detailed medical history from registered LAM patients for research purposes.
- Research Grant Program Grant funding program supporting LAM research including Pilot-Feasibility Research Awards (up to $50,000), Clinical Research Awards, and Patient Quality of Life Awards (up to $25,000), administered through ProposalCentral.
- VEGF-D Diagnostic Test Service Blood test for vascular endothelial growth factor D that can diagnose LAM without lung biopsy when levels exceed 800pg/ml, assessed at Cincinnati Children's Hospital Medical Center. Available to LAM clinic physicians and patients in the LAM Clinic Network.
- LAM Clinic and Research Network Global network of medical institutions providing state-of-the-art, multidisciplinary care for LAM patients, with over 41 US clinics and 36 international clinics listed for patient referrals and cooperative research.
- International LAM Research Conference & LAMposium Annual conference bringing together nearly 400 people from the global LAM community, including patients, researchers, and clinicians, for education and networking.
- Worldwide LAM Awareness Month (WLAM) Annual awareness campaign held each June to spread awareness, create connections, and bring hope to women living with LAM, featuring merchandise and fundraising challenges such as the TrilliumBio Challenge.
Quantifiable outcome
- Over 30 years, raised over $38 million with more than $19 million directed to research, generating an estimated $90 million in subsequent funding from other sources
- +4 more outcomes
Companies that use The LAM Foundation
Customer profileSegments4 records
Ideal customer profiles5 records
The LAM Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature3 records
The LAM Foundation partnerships and signals
Strategic signalPartnerships
15 partnerships are on record, tiered major and core.
- American College of Chest Physicians (CHEST)majorProfessional organization partnership focused on championing prevention, diagnosis, and treatment of chest diseases through education, communication, and research. CHEST collaborates with LAM Foundation on advancing respiratory health.
- American Lung AssociationmajorPartnership dedicated to saving lives by improving lung health and preventing lung disease. Collaborates with LAM Foundation on shared respiratory health goals.
- American Thoracic Society (ATS)majorATS partnership aims to accelerate global innovation in respiratory health through multidisciplinary collaboration, education, and advocacy. LAM Foundation participates in ATS International Conference annually.
- National Disease Research Interchange (NDRI)coreCore partnership for the LAM Tissue Collection Program. NDRI collects prospective surgical tissue samples and detailed medical history from registered LAM patients to accelerate research efforts.
- National Organization of Rare Disorders (NORD)majorPartnership with leading patient advocacy organization dedicated to rare disease identification, treatment, and cure. LAM Foundation is accredited via NORD since 2002.
- TSC AlliancecoreCritical partnership with the only national voluntary health organization for tuberous sclerosis complex. LAM and TSC-LAM share overlapping symptoms and research pathways. Partnership includes joint funding mechanisms like the Birt-Hogg-Dubé research program.
- Worldwide LAM Patient Coalition (WLPC)majorInternational coalition enabling member organizations to collaborate on research and support clinical trial recruitment. LAM Foundation leads this global movement to end LAM.
- University of CincinnaticoreEstablished The LAM Foundation Professorship for LAM Research in 2021. Partnership has achieved milestones including $20M in seed funding, NIH Rare Lung Disease Network grants, MILES clinical trial, and international clinical guidelines.
- Global GenesmajorPartnership with the Rare Foundation Alliance coalition of over 300 rare disease organizations. Global Genes Foundation Alliance partners exchange best practices and share experiences to drive better outcomes.
- TRAIN, The Milken InstitutemajorThe Research Acceleration and Innovation Network is a coalition of over 160 foundations taking a strategic venture philanthropy approach to funding medical research.
- Cincinnati Children's Hospital Medical CentercorePartners for LAM Cell Atlas development and VEGF-D testing. Cincinnati Children's conducts biomarker analysis and maintains the LAM Prediction (LAMP) Early Translation Study.
- National Health CouncilmajorLAM Foundation has been accredited via the National Health Council since 2002, providing a united voice for people with chronic diseases and disabilities and their family caregivers.
- Orphan Disease Center, University of PennsylvaniamajorPartnership focused on developing transformative therapies using platform technologies across multiple rare diseases, emphasizing disorders with substantial unmet needs.
- Rare Disease Diversity CoalitionmajorCoalition addressing systemic inequities that have caused a crisis for rare disease patients from historically marginalized populations, working toward health equity.
- TrilliumBiomajorLead advocate for The LAM Foundation Clinical Advisory Board. Sponsors the TrilliumBio Challenge offering $10,000 in funding when 10 WLAM fundraisers are completed.
Recent moves7 records
Expansion highlights5 records
The LAM Foundation competitors and assessment
Company assessmentDirect peers
- TSC Alliance: National voluntary health organization for tuberous sclerosis complex. TSC-LAM is biologically and clinically linked to LAM, and the foundations have joint funding mechanisms including the Birt-Hogg-Dubé program, making TSC Alliance the most directly comparable disease-specific peer.
- Cystic Fibrosis Foundation: The leading rare-lung-disease research and patient-advocacy foundation. Operates a comparable model of clinic network, research grants, drug-development pipeline partnerships (venture philanthropy), and patient registry — the gold-standard reference architecture for what the LAM Foundation aspires to scale.
- Pulmonary Fibrosis Foundation: Disease-specific nonprofit funding IPF research and operating a global clinic network (PFF Care Center Network). Strong structural analog to the LAM Foundation's research-grant-plus-clinic-network model in another rare/serious lung disease.
- Pulmonary Hypertension Association: Patient-advocacy and research foundation for a rare lung/cardiopulmonary disease with similar programmatic pillars: specialized care centers, peer-reviewed research grants, patient registry, and annual scientific and patient conferences.
- Alpha-1 Foundation: Nonprofit driving research, clinical care, and advocacy for Alpha-1 antitrypsin deficiency, a rare genetic lung disease. Operates a research registry, funded tissue/DNA repository, and Care Centers network — closely mirroring LAM Foundation operations at smaller scale.
Broad incumbents
- National Organization for Rare Disorders (NORD): Umbrella rare-disease advocacy organization of which the LAM Foundation is an accredited member since 2002. NORD is a broader incumbent spanning 300+ rare diseases, offering overlapping advocacy and policy services but not competing for LAM-specific research funding.
- American Lung Association: Broad lung-health nonprofit with overlapping respiratory-health mission and partner of the LAM Foundation. Larger and broader scope, not a disease-specific competitor; comparable as a peer institution with shared research-funding and policy-advocacy footprint.
Emerging players
- Histiocytosis Association: Smaller disease-specific rare-disease foundation that supports research funding, patient education, and a global network of clinicians for histiocytic disorders. Operates a similar grassroots, small-staff operating model focused on a rare disease with limited treatment options.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat6 records
Key risks6 records
Key highlights7 records
Customer concentration
The LAM Foundation social profiles
Digital presenceThe LAM Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
The LAM Foundation leadership team
Management profileNumber of profiles
Profiles14 records
The LAM Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
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The LAM Foundation M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about The LAM Foundation
What does The LAM Foundation do?
The LAM Foundation is a patient-advocacy and research-funding non-profit dedicated to lymphangioleiomyomatosis (LAM), a rare progressive lung disease primarily affecting women. It funds LAM research through a peer-reviewed grant program, operates a global LAM Clinic and Research Network, provides patient education and support services, and runs disease-specific data and biospecimen resources (the LAM Cell Atlas and a tissue donation program in partnership with NDRI).
Is The LAM Foundation a public or private company?
The LAM Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was The LAM Foundation founded?
The LAM Foundation was founded in 1995. It employs 1 to 10 people.
Where is The LAM Foundation based?
The LAM Foundation is headquartered in Cincinnati, United States, in the North America region.
Who are The LAM Foundation's main competitors?
Direct peers on record are TSC Alliance, Cystic Fibrosis Foundation, Pulmonary Fibrosis Foundation, Pulmonary Hypertension Association and Alpha-1 Foundation. Broad incumbents are National Organization for Rare Disorders (NORD) and American Lung Association. Histiocytosis Association is listed as an emerging player.
Does The LAM Foundation have an API?
No public API is recorded for The LAM Foundation.
What industry is The LAM Foundation in?
The LAM Foundation's product category is Rare Disease Patient Advocacy and Research Funding. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGAKAL, Health & Medical Research Grantmaking Foundations. Its NAICS code is 813212 and its SIC code is 8731.