Loeys-Dietz Syndrome Foundation

What Loeys-Dietz Syndrome Foundation does

The Loeys-Dietz Syndrome Foundation (LDSF) is a 501(c)(3) nonprofit organization dedicated to Loeys-Dietz Syndrome, a rare genetic connective tissue disorder first described in 2005 by Drs. Bart Loeys and Hal Dietz at Johns Hopkins University School of Medicine. Founded in 2006 and operating as a division of The Marfan Foundation (EIN 52-1265361), LDSF serves patients, families, caregivers, and healthcare professionals through a combined digital-and-in-person program portfolio: a nurse-staffed Help & Resource Center that reaches more than 5,000 people globally via web, email, and phone; monthly virtual support groups (LDS Connect and an International Connect group); the annual multi-day conference co-hosted with academic medical centers; Walk for Victory community walks across multiple US cities; Camp Victory for Kids and Camp Victory for Families; regional symposiums co-hosted with institutions such as Stanford, Emory, Weill Cornell, Atlantic Health, Lahey, Ponce Medical School, and Keck Medicine of USC; the HeartWorks Gala; a content library (webinars, fact sheets, clinical guidelines, the LDS 101 document, an Emergency Alert Card); and the annual March LDS Awareness Month campaign.

The foundation's technology footprint is intentionally non-proprietary: it relies on Squarespace for its website (loeysdietz.org), Zoom for virtual programming, the parent Marfan Foundation's donation platform (give.marfan.org), FreeWill for legacy giving, Crescendo for donor-advised funds, Facebook Fundraisers and Instagram Donation Stickers for peer-to-peer giving, and Bonfire for merchandise. There is no proprietary software product or AI/ML system; the differentiated value is human-curated medical content, community programming, and clinical partnerships. Revenue is generated through individual donations, recurring giving, fundraising events, tribute and legacy gifts, donor-advised funds, modest event registration fees (e.g., $25 for the NYC/Tristate Symposium), merchandise sales, and grants/donations from healthcare institution partners. The organization is volunteer-driven across standing committees (Development & Fundraising, Marketing, Education, Outreach, Conference) and reports ~80 cents of every dollar going to mission (per the parent Marfan Foundation's stated efficiency).

Name

Loeys-Dietz Syndrome Foundation

Legal name

The Loeys-Dietz Syndrome Foundation

Website

https://loeysdietz.org

Company type

Private

Founded year

2006

Operating status

Operating

Headcount range

1–10 employees

Short description

The Loeys-Dietz Syndrome Foundation (LDSF) is a 501(c)(3) nonprofit, operating as a division of The Marfan Foundation, that serves patients and families affected by Loeys-Dietz Syndrome through education, nurse-staffed support, virtual and in-person community programs, conferences, camps, and research funding.

Ownership category

akta.pro rank

Product category

Rare Disease Nonprofit Foundation

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190)

SIC

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

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease advocacy
• Patient support services
• Genetic disorder resources
• Medical education resources
• Community health programs

Headquarters

HQ city

Baltimore

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. Individual Donations: Tax-deductible donations directly support the LDSF mission. Donations are processed through The Marfan Foundation's donation platform. Recurring donor program allows monthly or quarterly automatic giving.
2. Fundraising Events: Revenue generated from participation in fundraising events including Walk for Victory teams, bowling nights, happy hours, bake sales, potlucks, and other community-organized events. Facebook Fundraisers and Instagram donation stickers also drive event-based fundraising.
3. Tribute Gifts and Memorial Donations: The Tribute Program allows donors to honor or memorialize individuals through donations. Users can create tribute pages or give directly to support existing tribute pages.
4. Legacy Gifts: Planned giving through wills, trusts, and bequests. FreeWill online tool is provided to help donors create legacy plans.
5. Donor Advised Funds: Donors can make gifts to LDSF through their Donor Advised Funds using the Foundation's website partnership with Crescendo.
6. Event Registration Fees: Some events have registration fees such as the NYC/Tristate Symposium ($25 registration fee includes breakfast and lunch). Conference has free Health Fair but general attendance may have fees.
7. Merchandise Sales: Shop sales through Bonfire store featuring awareness merchandise including t-shirts designed by community members.

Go-to-market motion2 records

Distribution channels6 records

Marketing channels10 records

Core offering

The Loeys-Dietz Syndrome Foundation provides medical information, patient education, community connection, advocacy, and research funding for individuals and families impacted by Loeys-Dietz Syndrome. Its core deliverables include virtual and in-person support groups, an annual conference, Camp Victory programs for children and families, Walk for Victory fundraising events, the Help & Resource Center staffed by registered nurses, medical guidelines and fact sheets, an Emergency Alert Card, webinars, and the March LDS Awareness Month campaign. The foundation itself does not sell commercial products; resources are provided free of charge, supported by donations.

Product overview

The Loeys-Dietz Syndrome Foundation (LDSF) is a nonprofit health organization (division of The Marfan Foundation) that provides a comprehensive suite of educational, support, and community programs for individuals and families affected by Loeys-Dietz syndrome. The foundation does not offer a traditional software product but delivers services through its website and in-person/virtual programs including: virtual support groups (LDS Connect, LDS International Connect) via Zoom; signature events such as the Annual Conference, Walk for Victory walks, Camp Victory for Kids and Families, and HeartWorks Gala; educational resources including webinars, fact sheets, and the Help & Resource Center staffed by nurses; and fundraising programs including recurring/legacy donations and social media fundraising tools (Facebook Fundraiser, Instagram Donation Sticker). The foundation also conducts an annual Heart of Gold Award recognition program and runs the LDS Awareness Month campaign each March.

Differentiator

Problem solved

Functional benefit

Products and services

• LDS Connect Support Group Virtual monthly support group for individuals diagnosed with Loeys-Dietz Syndrome, meeting on the second Thursday of every month from 7-8 pm ET via Zoom. Designed for LDS patients seeking peer connection and ongoing support.
• LDS International Connect Support Group Virtual support group for LDS community members living outside the United States, meeting on the 4th Monday of each month at 2 pm EST, providing English-language peer support for the international LDS community.
• Walk for Victory Non-competitive, family-oriented walk events held across multiple US cities to raise awareness and funds for the LDSF mission. Teams register and fundraising efforts support LDS programs, education, and research.
• Annual Conference Annual in-person conference providing medical education from experts, latest research updates, and community connection for individuals with Marfan, LDS, VEDS, Stickler syndrome, and related conditions. Includes specialized programs for children (ages 5-12), teens (ages 13-18), and adults, plus a Health Fair.
• Camp Victory for Kids Five-night overnight camp for children ages 7-16 with Marfan, VEDS, Loeys-Dietz, and related syndromes, as well as their siblings, held in California and Georgia locations with medical staff and volunteer counselors.
• Camp Victory for Families Family camp program where families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes participate in traditional camp activities in a safe and accessible environment with discounted registration thanks to donor support.
• HeartWorks Gala Annual formal gala event to raise funds and celebrate the mission, with the 6th Annual Houston HeartWorks Gala scheduled for December 4, 2026.
• Webinars Archive of educational webinars covering personal perspectives, surgery series, medical symposiums, and resources for individuals on their Loeys-Dietz journey.
• Help & Resource Center Staffed by registered nurses and a Spanish-language services manager, providing medical information and support reaching more than 5,000 people worldwide via websites, emails, and one-on-one phone calls.
• Medical Guidelines and Fact Sheets Downloadable resources including the LDS 101 document covering medical terminology, fact sheets, LDSF Brochure, and clinical guidelines for diagnosis and management of Loeys-Dietz Syndrome.
• Emergency Preparedness Kit Emergency preparedness materials including an Emergency Alert Card designed for first responders with critical information about Loeys-Dietz Syndrome.
• Recurring Donor Program Monthly or quarterly automatic giving program allowing donors to create a sustainable revenue stream for the foundation through recurring donations.
• Legacy Donations Planned giving options including wills, trusts, and tribute gifts to celebrate milestones, honor individuals, or memorialize loved ones, with a FreeWill online tool to help donors create legacy plans.
• LDS Awareness Month Campaign Annual March awareness campaign featuring activities, resources, community events, education initiatives, and fundraising opportunities, with a 2026 theme of 'MORE'. Includes the Wear Blue Give Green Day of Giving on March 20 and advocacy for legislative proclamations.
• Sydney Lerman Hospitality Program Hospitality program supporting community members at events and conferences.
• Regional Medical Symposiums Regional symposiums co-hosted with healthcare institutions including Stanford Health Care, Morristown Medical Center, Lahey Hospital, and Ponce Medical School Foundation, providing expert medical lectures, Q&A sessions, and community connection for those with genetic aortic and vascular conditions.

Quantifiable outcome

• Help & Resource Center reaches more than 5,000 people worldwide annually
• +2 more outcomes

Named customers4 records

Segments5 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration4 records

Partnerships

13 partnerships are on record, tiered core and minor.

• SIMA (Asociación Síndrome de Marfan-España)coreStrategic or Co-development Partner · 3 October 2026Spanish partner co-presenting the Simposio Internacional en Barcelona on October 3, 2026, providing Spanish-language programming for Marfan, Loeys-Dietz, VEDS, and Stickler communities.
• Weill Cornell MedicinecoreStrategic or Co-development Partner · 16 May 2026Co-presenter with The Marfan Foundation of the NYC/Tristate Symposium on May 16, 2026, providing latest updates on treatment, medical management, and quality-of-life issues for Marfan, LDS, VEDS, and Stickler conditions.
• Children's Healthcare of AtlantacoreStrategic or Co-development Partner · 10 July 2025Co-host of the 2025 annual Conference (July 10-13, 2025) at Hyatt Regency Atlanta. Provides medical expertise and venue support for the educational programming and Health Fair.
• Emory HealthcarecoreStrategic or Co-development Partner · 10 July 2025Co-host of the 2025 annual Conference alongside Children's Healthcare of Atlanta. Contributes medical expertise and healthcare professional participation to the educational symposium.
• The Marfan FoundationcoreStrategic or Co-development PartnerThe Loeys-Dietz Syndrome Foundation is a division of The Marfan Foundation. Through this relationship, donations to LDSF are tax-deductible (EIN: 52-1265361) and directly support the shared mission. The Marfan Foundation provides operational infrastructure, donation processing, and administrative support while LDSF maintains its focused mission on Loeys-Dietz Syndrome.
• Keck Medicine of USC Cardiac and Vascular InstitutecoreStrategic or Co-development PartnerMajor donor providing significant support for Camp Victory for Families California 2026, significantly discounting registration fees for families.
• Stanford Health CarecoreStrategic or Co-development PartnerCo-host of Northern California Regional Symposium scheduled for April 5, 2025, bringing expert medical education to the regional LDS community.
• Atlantic Health / Morristown Medical CentercoreStrategic or Co-development PartnerCo-host of New Jersey Regional Symposium featuring expert lectures, Q&A sessions, and community connection opportunities for those with genetic aortic and vascular conditions.
• Lahey Hospital (Massachusetts)coreStrategic or Co-development PartnerCo-host of New England/Boston area symposium providing expert medical participation and venue for community education and connection.
• Ponce Medical School Foundation, Inc. (Puerto Rico)coreStrategic or Co-development PartnerCo-host of Puerto Rico Regional Symposium providing Spanish-language expert medical education and community connection for the Spanish-speaking LDS community.
• Camp Twin LakescoreStrategic or Co-development PartnerPartnership providing camp facilities for Camp Victory for Families Georgia 2026, with registration fees significantly discounted thanks to this donor's support.
• Sierra Nevada JourneysminorStrategic or Co-development PartnerCamp venue provider for Camp Victory for Kids California 2026 at 5900 Grizzly Rd, Portola, CA 96122.
• Aortic HopecoreGTM or Marketing PartnerPartner organization working together to raise awareness among medical professionals and laypeople about aortic dissection signs, symptoms and risk through the #ThinkAorta and #ThinkAortaThinkFamily campaigns.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• VEDS Movement (Vascular EDS): A nonprofit focused on Vascular Ehlers-Danlos Syndrome, another rare connective tissue disorder commonly grouped with LDS and Marfan in joint events (e.g., Camp Victory). Operates as a comparable patient advocacy and research funding organization.
• The Marfan Foundation: The Marfan Foundation is the parent organization of LDSF and operates as the primary operational, financial, and fundraising platform for the LDS community. It directly serves overlapping patient populations with related connective tissue disorders and shares staff, infrastructure, and donor base.
• Ehlers-Danlos Society: A leading nonprofit dedicated to Ehlers-Danlos syndromes, which are also rare connective tissue disorders with similar multisystem manifestations. Operates as a comparable patient-education, research-funding, and community-support organization targeting a closely related rare disease population.
• Aortic Hope: A nonprofit organization focused on aortic disease awareness, education, and patient support. LDSF is already a listed partner on Aortic Hope's #ThinkAorta campaigns, indicating direct collaboration in the same patient advocacy space.
• Genetic Aortic Disorders Association (GADA) Canada: A Canadian nonprofit organization dedicated to supporting individuals and families affected by genetic aortic disorders, including LDS, Marfan, and VEDS. Operates a comparable patient support, education, and awareness model in a related condition space.

Emerging players

• Stickler Involved People: A smaller patient support organization for Stickler syndrome, which is co-mentioned in LDSF/Marfan Foundation programs and conferences. Operates a similar rare-disease support and education model at a smaller scale.

Broad incumbents

• National Organization for Rare Disorders (NORD): The largest US umbrella organization for rare diseases. While not disease-specific like LDSF, NORD operates in the same patient advocacy, research funding, and policy space and serves as a broader platform many disease-specific foundations engage with.

Others

• Aortic Dissection Awareness Foundation: A nonprofit dedicated to raising awareness of aortic dissection, a life-threatening complication directly relevant to LDS patients. Operates in an adjacent advocacy niche and represents a potential collaboration or referral partner.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xtwitter.com/marfanfoundation
• YouTubeyoutube.com/user/marfanfoundation
• Facebookfacebook.com/fund/TheMarfanFoundation
• LinkedInlinkedin.com/company/loeys-dietz-syndrome-foundation
• Instagraminstagram.com/marfanfoundation

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 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 Loeys-Dietz Syndrome Foundation