The Marfan Foundation

What The Marfan Foundation does

The Marfan Foundation is a 501(c)(3) nonprofit organization founded in 1981 and headquartered at 22 Manhasset Avenue in Port Washington, NY (EIN 52-1265361), serving patients and families affected by Marfan syndrome and a portfolio of related genetic aortic and vascular conditions including Loeys-Dietz syndrome, Vascular Ehlers-Danlos Syndrome (VEDS), Stickler syndrome, and others. The Foundation's primary platform is marfan.org, a patient-education and resource hub available in over 25 languages that serves as a digital front door for diagnosis guidance, genetic testing information, treatment management, emergency preparedness, mental health resources, and a Find Care directory. Its operating divisions include the Loeys-Dietz Syndrome Foundation, The VEDS Movement (which absorbed the DEFY Foundation in 2026), and the Genetic Aortic Network, a science-and-treatment arm convening researchers and clinicians internationally.

The Foundation's core products and services are the marfan.org website, the Marfan DX diagnostic tool, the Research Grant Program (which awarded $1.44 million across seven projects in 2025), an extensive virtual support group network (VEDS Connect, LDS Connect, Marfan Connect, Stickler Connect, Kids Club, Teen Talk, Young Adults, Seniors, Conexiones Spanish-language, plus condition-specific parent groups), international symposiums held in London, Barcelona, and the NYC/Tristate area with healthcare provider co-presenters, overnight Camp Victory programs for children aged 7-16, and Walk for Victory community walks in at least seven US cities. Technology integrations are conventional — Zoom for virtual delivery, Bonfire for merchandise, TFA Forms for event registration, and a third-party payment processor for donations handled via give.marfan.org and events.marfan.org — with GDPR, CCPA, and SOC 2 Type 2-aligned security practices.

Revenue mechanics are exclusively nonprofit: individual donations (processed via dedicated giving platforms), event-based fundraising (signature galas Heartworks NYC and Lunch with Heart Palm Beach, Walk for Victory walks, Driving for DEFY golf tournament, international marathon teams at BMW Berlin Marathon and Schneider Electric Paris Marathon), corporate and foundation grants (e.g., Chu and Chan Foundation), nominal fees for educational events such as the $25 NYC/Tristate Symposium registration, and merchandise sales through Bonfire. The Foundation is governed by a board chaired by Bert Medina, with Josephine Grima, PhD as Chief Science Officer and Eileen Novins as Chief Global Business Development Officer. The Foundation is recognized as a 501(c)(3) tax-exempt organization with Charity Navigator's 4-star rating and BBB Wise Giving Alliance accreditation.

Name

The Marfan Foundation

Legal name

The Marfan Foundation

Website

http://www.marfan.org

Company type

Private

Founded year

1981

Operating status

Operating

Headcount range

11–50 employees

Short description

The Marfan Foundation is a 501(c)(3) nonprofit founded in 1981 that supports patients and families affected by Marfan syndrome and related genetic aortic and vascular conditions through multilingual patient education, a $1.44 million annual research grant program, virtual support groups, and international symposiums across the US, UK, and Spain.

Ownership category

akta.pro rank

Product category

Patient Advocacy Nonprofit Services

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Patient advocacy services
• Genetic disease research
• Rare disease support
• Community health education
• Nonprofit healthcare

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Marketing or Sales, Infrastructure, Supply Chain, Others

Revenue model

1. Individual Donations: Tax-deductible contributions from individuals supporting the foundation's mission to improve outcomes for people with Marfan and related genetic aortic and vascular conditions
2. Event-Based Fundraising: Revenue from signature events including Walk for Victory, Heartworks NYC gala, Lunch with Heart Palm Beach, Driving for DEFY Golf Tournament, and international marathons (Berlin, Paris)
3. Corporate and Foundation Grants: Education grants and institutional funding from organizations such as Chu and Chan Foundation for website and educational initiatives
4. Merchandise Sales: Online shop selling branded merchandise through bonfire.com/store/marfanfoundation
5. Event Registration Fees: Nominal registration fees for educational symposiums ($25 for NYC/Tristate Symposium includes breakfast and lunch), with free access for medical students

Pricing tiers

Go-to-market motion2 records

Distribution channels9 records

Marketing channels14 records

Core offering

The Marfan Foundation is a 501(c)(3) nonprofit that drives research, education, and support for people living with Marfan syndrome and related genetic aortic and vascular conditions (Loeys-Dietz, VEDS, Stickler, and others). It delivers a multilingual patient education portal, monthly virtual support groups, regional and international symposiums, a research grant program, and overnight camps and community walks, funded primarily by individual donations, corporate and foundation grants, and event-based fundraising.

Product overview

The Marfan Foundation is a nonprofit organization that operates a multi-faceted digital and community-based service platform rather than a single commercial product. The core offerings include the marfan.org website serving as the primary patient education hub, Marfan DX diagnostic tool, and the comprehensive Research Grant Program funding $1.44M annually in genetic aortic research. The Foundation provides an extensive virtual support group network (VEDS Connect, LDS Connect, Marfan Connect, Stickler Connect, Kids Club, Teen Talk, Young Adults, and Spanish-language Conexiones), international symposiums in multiple languages (NYC, London, Barcelona), Camp Victory overnight programs, Walk for Victory fundraising events, and a Resource Library. The organization also operates specialized divisions including the Loeys-Dietz Syndrome Foundation and The VEDS Movement, along with the Genetic Aortic Network connecting global researchers and clinicians. The platform offers Find Care Directory and Ask a Nurse/Help & Resource Center for patient support. The Foundation has expanded its multilingual reach to over 25 languages and conducts international webinar series for global audiences.

Differentiator

Problem solved

Functional benefit

Brands

• Loeys-Dietz Syndrome Foundation: Division focused on Loeys-Dietz Syndrome support and awareness
• The VEDS Movement
• Genetic Aortic Network (GAN)
• Walk for Victory
• Heartworks
• Lunch with Heart
• Camp Victory for Kids

Products and services

• Marfan Foundation Website (marfan.org)
• Marfan DX
• Virtual Support Groups
• International Symposiums
• Research Grant Program
• Camp Victory
• Walk for Victory
• Resource Library
• Spanish-Language Programs
• Team Victory Marathon Program
• Find Care Directory
• Genetic Aortic Network
• Loeys-Dietz Syndrome Foundation
• The VEDS Movement
• Ask a Nurse / Help & Resource Center
• International Webinar Series

Quantifiable outcome

• 1.44 million in research grants awarded in 2025 supporting 7 high-impact projects
• +2 more outcomes

Named customers6 records

Segments8 records

Ideal customer profiles6 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration5 records

Feature1 record

Partnerships

Twelve partnerships are on record, tiered core, minor and major.

• Marfan Trust UKcoreStrategic or Co-development Partner · 10 October 2026UK organization collaborating on Second International Symposium/London: Living Better with Marfan, Loeys-Dietz, VEDS, and Stickler. Partnership continuing to build relationships and advance research.
• The Aortic Dissection Charitable Trust (UK)coreStrategic or Co-development Partner · 10 October 2026UK organization co-presenting Second International Symposium/London. Collaboration focused on improving outcomes for those with genetic aortic conditions.
• Stickler Syndrome UKcoreStrategic or Co-development Partner · 10 October 2026UK organization co-presenting Second International Symposium/London, expanding scope to include Stickler syndrome for the first time.
• Annabelle's Challenge (UK)coreStrategic or Co-development Partner · 10 October 2026UK vascular Ehlers-Danlos syndrome organization co-presenting Second International Symposium/London.
• SIMA - Asociación Síndrome de Marfan-EspañacoreStrategic or Co-development Partner · 3 October 2026Spanish Marfan Foundation co-presenting International Symposium in Barcelona: Claves para una vida plena con Marfan, Loeys-Dietz, VEDS y Stickler. Program delivered entirely in Spanish with Spanish medical experts.
• DEFY FoundationcoreStrategic or Co-development Partner · 18 July 2026The DEFY Foundation joined forces with The Marfan Foundation and its VEDS Movement division. Together they have raised over $160,000 through the Driving for DEFY golf outing over 12 years. DEFY's mission is to enable rapid discovery of viable treatments and a cure for VEDS by serving as connective tissue between researchers, pharmaceutical leaders, and the VEDS community.
• Weill Cornell MedicinecoreStrategic or Co-development Partner · 16 May 2026Co-presenting NYC/Tristate Symposium: Living Better with Marfan, Loeys-Dietz, VEDS, & Stickler. Educational opportunity for individuals and families with latest updates on treatment, medical management, and quality-of-life issues.
• The Brompton Fountain (UK)minorGTM or Marketing Partner · 18 March 2026UK charity providing onsite activities for children ages 5-12 during London International Symposium. Childcare services managed by Brompton Fountain during event hours.
• Loeys-Dietz Syndrome Foundation CanadacoreStrategic or Co-development Partner · 23 February 2026First-ever joint virtual event with Canadian organization to share personal perspectives on living with Loeys-Dietz Syndrome. Joint webinar: People's Perspectives: Living with Loeys-Dietz Syndrome.
• European Society of Cardiology (ESC)majorStrategic or Co-development PartnerJoint session with ESC at Science in Spain meeting (Barcelona, October 4-7, 2026). New collaboration combining Marfan Foundation expertise with ESC's European cardiology network.
• Think Aorta Australia and New ZealandminorStrategic or Co-development PartnerDr. Geoffrey Lester, head of Think Aorta ANZ, serves as featured speaker for Foundation webinars on aortic emergencies targeting Australian and New Zealand audiences.
• Genetic Aortic Network (GAN)coreStrategic or Co-development PartnerThe Foundation hosts the Genetic Aortic Network, a science and treatment arm. Network includes Education Working Group with regional leads like Dr. Michelle Lim for Australia/New Zealand.

Scale indicators13 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• The Ehlers-Danlos Society: Global nonprofit serving patients with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders - an adjacent connective tissue disease community served by The Marfan Foundation through conditions like VEDS and kEDS.
• Aortic Dissection Charitable Trust: UK-based charity co-presenting the Second International Symposium/London with The Marfan Foundation; focuses on improving outcomes for those with aortic disease including genetic aortic conditions.
• Annabelle's Challenge: UK vascular Ehlers-Danlos syndrome organization co-presenting The Marfan Foundation's international symposium; operates as a sister VEDS-focused nonprofit serving overlapping patient communities.

Regional players

• Marfan Trust UK: UK Marfan-focused organization that co-presents The Marfan Foundation's London International Symposium; offers directly comparable patient support and education services but focused on the UK.
• Think Aorta Australia and New Zealand: Australia/New Zealand aortic awareness campaign contributing speakers to The Marfan Foundation's ANZ webinars; serves overlapping patient populations around genetic and emergency aortic conditions in a different geography.

Broad incumbents

• National Organization for Rare Disorders (NORD): US umbrella organization representing ~300 rare disease patient communities including Marfan syndrome; offers broader grant programs and policy advocacy but does not specialize in connective tissue disorders.
• Genetic Alliance: US nonprofit coalition of genetic condition advocacy organizations including many overlapping with The Marfan Foundation's patient base; offers broader genetic condition infrastructure rather than disease-specific specialization.
• American Heart Association: Largest US cardiovascular nonprofit with extensive research funding capacity; covers aortic disease in its portfolio but does not specialize in genetic connective tissue disorders, making it a broad-overlap competitor for cardiovascular donor dollars.
• Cystic Fibrosis Foundation: Long-established disease-specific research and patient support foundation that pioneered the venture philanthropy model for rare diseases; serves as a structural benchmark and potential donor-share competitor in the rare disease nonprofit space.
• Muscular Dystrophy Association: Large US nonprofit funding neuromuscular disease research and patient services; comparable organizational model combining research grants, support services, and broad fundraising apparatus that competes for similar rare-disease donor dollars.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/marfanfdn
• YouTubeyoutube.com/themarfanfoundation
• Facebookfacebook.com/themarfanfoundation
• LinkedInlinkedin.com/company/national-marfan-foundation
• Instagraminstagram.com/themarfanfoundation
• TikToktiktok.com/@themarfanfoundation

Compliance4 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The Marfan Foundation