The Marfan Foundation
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.
- Company typePrivate
- Founded1981
- HeadquartersNew York, United States
- Headcount11–50
- GTM typeB2C
- OfferingServices
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.
The Marfan Foundation firmographics
Firmographics- Name
- The Marfan Foundation
- Legal name
- The Marfan Foundation
- Website
- https://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
The Marfan Foundation industry classification
Industry- 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
Where The Marfan Foundation is headquartered
LocationHeadquarters
- HQ city
- New York
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
The Marfan Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Technology or R&D, Marketing or Sales, Infrastructure, Supply Chain, Others
Revenue model
- 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
- 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)
- Corporate and Foundation Grants: Education grants and institutional funding from organizations such as Chu and Chan Foundation for website and educational initiatives
- Merchandise Sales: Online shop selling branded merchandise through bonfire.com/store/marfanfoundation
- 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
| Model | Billing | Price |
|---|---|---|
| Subscription | One-time | NYC/Tristate Symposium Registration |
| Subscription | One-time | Camp Victory for Kids |
| Subscription | One-time | London International Symposium |
| Subscription | One-time | Barcelona International Symposium |
Go-to-market motion2 records
Distribution channels9 records
Marketing channels14 records
The Marfan Foundation product offering
Product offeringCore 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
Companies that use The Marfan Foundation
Customer profileNamed customers6 records
Segments8 records
Ideal customer profiles6 records
The Marfan Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration5 records
Feature1 record
The Marfan Foundation partnerships and signals
Strategic signalPartnerships
Twelve partnerships are on record, tiered core, minor and major.
- Marfan Trust UKcoreUK 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)coreUK organization co-presenting Second International Symposium/London. Collaboration focused on improving outcomes for those with genetic aortic conditions.
- Stickler Syndrome UKcoreUK organization co-presenting Second International Symposium/London, expanding scope to include Stickler syndrome for the first time.
- Annabelle's Challenge (UK)coreUK vascular Ehlers-Danlos syndrome organization co-presenting Second International Symposium/London.
- SIMA - Asociación Síndrome de Marfan-EspañacoreSpanish 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 FoundationcoreThe 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 MedicinecoreCo-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)minorUK 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 CanadacoreFirst-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)majorJoint 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 ZealandminorDr. 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)coreThe 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
The Marfan Foundation competitors and assessment
Company assessmentDirect 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
The Marfan Foundation social profiles
Digital presenceThe Marfan Foundation compliance and trust
Trust signalCompliance4 records
The Marfan Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
The Marfan Foundation leadership team
Management profileNumber of profiles
Profiles6 records
The Marfan Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
The Marfan Foundation M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about The Marfan Foundation
What does The Marfan Foundation do?
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.
Is The Marfan Foundation a public or private company?
The Marfan Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was The Marfan Foundation founded?
The Marfan Foundation was founded in 1981. It employs 11 to 50 people.
Where is The Marfan Foundation based?
The Marfan Foundation is headquartered in New York, United States, in the North America region.
How does The Marfan Foundation make money?
Five revenue lines are on record. Individual Donations are the primary driver. The others are event-Based Fundraising, corporate and Foundation Grants, merchandise Sales and event Registration Fees.
Who are The Marfan Foundation's main competitors?
Direct peers on record are The Ehlers-Danlos Society, Aortic Dissection Charitable Trust and Annabelle's Challenge. Regional players are Marfan Trust UK and Think Aorta Australia and New Zealand. Broad incumbents are National Organization for Rare Disorders (NORD), Genetic Alliance, American Heart Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association.
Does The Marfan Foundation have an API?
No public API is recorded for The Marfan Foundation.
What industry is The Marfan Foundation in?
The Marfan Foundation's product category is Patient Advocacy Nonprofit Services. 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 8300.