The Marfan Foundation

Mission

The Marfan Foundation drives research, education and support, and builds community to improve outcomes, save lives and empower all people to thrive who are living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos syndromes, and related genetic aortic and vascular conditions.

Vision

Quality of life, longevity, and cures for all people with genetic aortic and vascular conditions.

Goals

1.To establish an expanded international presence including an international federation of stakeholders that would dynamically collaborate, share valuable knowledge, and drive research innovation. Create a global Healthcare Alliance. Redesign all the condition specific websites to enhance access to those who have connective tissue conditions, their support network, expert physicians.
2.Enhance our research programs and medical expertise: -Improving the cross-utilization of existing registry information and the access to this information by supporting and promoting the most promising existing registries -Increasing the pipeline of specialists for aortic conditions by increasing mentorship programs.
3.Launch Research Capital Campaign.

Port Washington NY | EIN: 52-1265361

Profile managed by nonprofit | Is this your nonprofit?

501(c)(3) organization

22 Manhasset Avenue,
Port Washington NY 11050

https://www.marfan.org

516-883-8712

The Marfan Foundation

Mission

Vision

Quality of life, longevity, and cures for all people with genetic aortic and vascular conditions.

Goals

1.To establish an expanded international presence including an international federation of stakeholders that would dynamically collaborate, share valuable knowledge, and drive research innovation. Create a global Healthcare Alliance. Redesign all the condition specific websites to enhance access to those who have connective tissue conditions, their support network, expert physicians.
2.Enhance our research programs and medical expertise: -Improving the cross-utilization of existing registry information and the access to this information by supporting and promoting the most promising existing registries -Increasing the pipeline of specialists for aortic conditions by increasing mentorship programs.
3.Launch Research Capital Campaign.

Port Washington NY | EIN: 52-1265361

Profile managed by nonprofit | Is this your nonprofit?

501(c)(3) organization

22 Manhasset Avenue,
Port Washington NY 11050

https://www.marfan.org

516-883-8712

Beacon Report

Great
Good
Needs Improvement
Poor
Not Scored
Additional Information

Website Reported on Tax Form:Yes

SCORE100%

No Material Diversion of Assets:Yes

SCORE100%

Financial Statements:Yes

SCORE100%

Audit Oversight Committee:Yes

SCORE100%

No Loans Reported To or From Officers:Yes

SCORE100%

Records Retention Policy:Yes

SCORE100%

Tax Form Disclosed on Website:Yes

SCORE100%

Accountability Panel
Score	Metric
100%	Website Reported on Tax Form:Yes
100%	No Material Diversion of Assets:Yes
100%	Financial Statements:Yes
100%	Audit Oversight Committee:Yes
100%	No Loans Reported To or From Officers:Yes
100%	Records Retention Policy:Yes
100%	Tax Form Disclosed on Website:Yes

Science behind the numbers

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Mission

Mission

Beacon Report