Lynch Syndrome International

What Lynch Syndrome International does

Lynch Syndrome International (LSI) is a 501(c)(3) public charity that raises awareness, educates, and supports research on Lynch syndrome, a hereditary cancer predisposition caused by mutations in mismatch repair genes (MLH1, MSH2, MSH6, PMS2, and EPCAM). The organization serves three primary constituencies: previvors (genetically positive but cancer-free), survivors (diagnosed with Lynch-related cancers), and at-risk family members, with healthcare providers (physicians, genetic counselors, oncologists, gastroenterologists) as a secondary audience. The organization is named after Dr. Henry T. Lynch, founder of the field, and operates as a virtual nonprofit with no physical headquarters (mailing address only at P.O. Box 19, Madison, Connecticut), running with minimal overhead and a primarily volunteer workforce.

The core offering is a web-based information platform at lynchcancers.com that delivers free downloadable fact sheets, FAQs, surveillance guidelines, family communication tools, and clinical-trial information. Product lines include downloadable pamphlets, the annual March 22 Lynch Syndrome Hereditary Cancer Awareness Day, the LSI Buddy to Buddy peer-support program, the Regional Grassroots Coordinator volunteer network, and clinical-trial referral services. Distribution occurs through self-serve website downloads, print pamphlet requests, direct distribution to tens of thousands of U.S. physician offices annually, and a volunteer-led distribution network; clinical-trial recruitment partnerships with MD Anderson Cancer Center (HEALTH4 study) and Merck (pembrolizumab KEYNOTE trials) extend research-related reach.

LSI's revenue model is donations-driven: tax-deductible contributions are accepted via check, JUSTGIVE.ORG, iGive.com, and grassroots fundraisers. Approximately 10% of donations fund patient financial assistance and 10% support research financing, with the remainder directed to public-awareness projects. Leadership comprises Executive Director Susan Dallas McDevitt, Advocacy Director Jill Chang, and Treasurer Dave Wortman. The organization is independent, with no parent company, no institutional investors, and no venture or private-equity ownership.

Name

Lynch Syndrome International

Legal name

Lynch Syndrome International

Website

https://lynchcancers.com

Company type

Private

Founded year

2012

Operating status

Operating

Headcount range

11–50 employees

Short description

Lynch Syndrome International is a volunteer-driven 501(c)(3) nonprofit that educates previvors, survivors, and at-risk families about Lynch syndrome hereditary cancers, distributes free resources to U.S. physician offices, and supports clinical-trial recruitment through partnerships with MD Anderson and Merck.

Ownership category

akta.pro rank

Product category

Hereditary Cancer Patient Advocacy and Education Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

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

Keywords

• Hereditary cancer awareness
• Patient advocacy services
• Genetic cancer education
• Peer support programs
• Nonprofit health organization

Headquarters

HQ city

Madison

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Charitable Contributions: 501(c)(3) public charity accepting tax-deductible donations via check, online portals (JUSTGIVE.ORG, iGive.com). Minimal operational costs; funds directed toward public awareness projects, patient assistance (10%), and research financing (10%).

Go-to-market motion1 record

Distribution channels5 records

Marketing channels11 records

Core offering

Lynch Syndrome International is a 501(c)(3) public charity that provides free educational resources, awareness campaigns, peer support, and clinical trial information for individuals and families affected by Lynch syndrome, a hereditary cancer predisposition. The organization distributes downloadable fact sheets, pamphlets, surveillance and genetic testing guidelines, and operates the Buddy to Buddy peer support program and Regional Grassroots Coordinator volunteer network. LSI's products and services are provided at no cost and funded through charitable donations.

Product overview

Lynch Syndrome International is a 501(c)(3) non-profit organization dedicated to protecting families and saving lives from Lynch Syndrome hereditary cancers. The organization offers a comprehensive suite of educational, support, and awareness programs centered on Lynch Syndrome—a hereditary disorder caused by mutations in mismatch repair genes (MLH1, MSH2, MSH6, PMS2, and EPCAM). The core offerings include educational resources about diagnosis, treatment, and surveillance; downloadable fact sheets and pamphlets; the annual March 22 Lynch Syndrome Hereditary Cancer Awareness Day; patient support resources including peer support through the Buddy to Buddy Program; clinical trial information; genetic testing guidance; surveillance testing guidelines based on NCCN recommendations; and practical assistance resources covering financial aid, transportation, and lodging. Regional Grassroots Coordinators facilitate community-level support groups and awareness campaigns throughout the United States.

Differentiator

Problem solved

Functional benefit

Products and services

• Lynch Syndrome Education and Awareness Programs Core free educational resources and awareness campaigns about Lynch syndrome hereditary cancer, covering diagnosis, treatment, surveillance, and family management for previvors, survivors, at-risk family members, and healthcare providers.
• Downloadable Fact Sheets and Pamphlets Free PDF brochures including the Lynch Syndrome FAQs and Gynecologic Cancer Brochure, available for download and physical distribution to patients and medical providers via a print pamphlet request system.
• March 22 Lynch Syndrome Hereditary Cancer Awareness Day Annual public awareness day held on March 22nd to promote Lynch syndrome awareness and education among families and healthcare providers.
• Clinical Trial Information Portal Information portal about ongoing clinical trials relevant to Lynch syndrome patients, including Merck's pembrolizumab trials (KEYNOTE-164, KEYNOTE-177, KEYNOTE-158), MD Anderson's HEALTH4 study, and other colorectal cancer prevention initiatives.
• LSI Buddy to Buddy Program Volunteer peer support program that connects newly diagnosed previvors and survivors with trained peer supporters who have personal experience with Lynch syndrome.
• Patient Support Resources Comprehensive free support resources including assistance organizations, support groups, young adults with cancer resources, and guidance for underserved populations affected by Lynch syndrome.
• Financial and Practical Assistance Resources Free resources for patients including prescription assistance, health insurance guidance, groceries assistance, air transportation, and lodging during treatment programs; 10% of donations are directed to patient financial assistance.
• Regional Grassroots Coordinator Network Volunteer-led regional network that facilitates local support groups, awareness campaigns, and fundraising events for Lynch syndrome across the United States and globally.

Quantifiable outcome

• Distributed tens of thousands of educational brochures to physicians annually
• +2 more outcomes

Named customers1 record

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Two partnerships are on record, tiered core and minor.

• MD Anderson Cancer CentercoreStrategic or Co-development PartnerLSI partners with MD Anderson Cancer Center to recruit patients for the HEALTH4 study, a research program helping Lynch syndrome-positive individuals lead healthy lifestyles with family members. Participants receive Fitbit devices, diet and exercise tips, weekly guidance and resources at no cost.
• Merck (Pembrolizumab Clinical Trials)minorStrategic or Co-development PartnerLSI promotes Merck's clinical trials using anti-PDI mAb pembrolizumab for individuals with advanced stage MSI-H cancers, including KEYNOTE-164, KEYNOTE-177, and KEYNOTE-158 trials. LSI helps recruit patients for these studies.

Scale indicators5 records

Recent moves1 record

Expansion highlights5 records

Direct peers

• FORCE (Facing Our Risk of Cancer Empowered): National nonprofit serving individuals and families with hereditary cancer (BRCA and beyond). Operates an analogous previvor/survivor peer-support, education, and research-advocacy model directly comparable to LSI's Lynch syndrome mission.
• AliveAndKickn: Lynch syndrome-specific nonprofit focused on awareness, education, and supporting affected families. Direct, niche-overlap competitor for the same donor and previvor audience LSI serves.
• Bright Pink: National nonprofit focused on prevention and early detection of breast and ovarian cancer in young women, particularly previvors with genetic mutations. Closely comparable previvor education and peer-support model.
• Hereditary Colon Cancer Foundation: Nonprofit dedicated to serving families with Lynch syndrome and other hereditary colon cancers. Closely aligned mission, audience, and resource model — direct peer in the Lynch/colon hereditary cancer niche.

Broad incumbents

• American Cancer Society: Largest U.S. cancer nonprofit with broad research, patient support, and awareness mandates. Competes for donor dollars and could absorb Lynch-specific content into its wider colorectal and hereditary cancer programming.
• National Organization for Rare Disorders (NORD): Largest U.S. rare-disease umbrella organization with broad advocacy, education, and patient-support programs. Overlaps with LSI on rare-disease framing and policy but does not specialize in hereditary cancer.

Emerging players

• Fight Colorectal Cancer: Patient advocacy nonprofit focused on colorectal cancer research, policy, and awareness. Overlaps with LSI on colon cancer patient education and screening advocacy, though not specific to hereditary syndromes.
• Global Genes: Rare-disease advocacy and education organization building a global network of patient communities. Comparable mission framing and toolkit for small disease-specific nonprofits; partial overlap with LSI's awareness goals.
• Colorectal Cancer Alliance: National colorectal cancer nonprofit with patient support, screening, and research programs. Overlaps with LSI on colon cancer awareness and survivor services but with a broader (not hereditary-specific) mandate.

Others

• Cancer Support Community: National nonprofit providing psychosocial support, education, and community for cancer patients and families. Adjacent rather than competing — provides a complementary support infrastructure LSI's patients may be referred into.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/LynchCancers

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Lynch Syndrome International