Know the Signs, Fight for Victory

About the Marfan Foundation

The Marfan Foundation’s mission is to save lives and improve the quality of life of individuals with Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos syndrome (VEDS), and other genetic aortic and vascular conditions.

Our Values

In our mission to save and improve lives, we hold a number of core beliefs and values that drive everything we do:

We put families at the heart of what we do.
Marfan, Loeys-Dietz, VEDS, and related conditions affect not only individuals, but also the people who love them. We stand with and for the whole community.

We are vigilant in getting people diagnosed.
Too often Marfan syndrome, Loeys-Dietz, VEDS, and related conditions go undiagnosed. A diagnosis followed by proper treatment can save lives.

We constantly push innovation forward.
We are relentless in coming up with creative strategies to advance research, using state-of-the-art tools to provide family support, and seeking the best ways to share the latest, most accurate information with our community.

We create a path if there isn’t a clear one.
A community that has, in the past, felt lost, frustrated, or confused needs a strong leader. We constantly drive progress forward—through research, education, and support for our community.

We build a welcoming and effective community.
Partnerships are the key to victory, and we initiate collaborations with those who help us get there. And because we can achieve more by working together, our community welcomes people living with Marfan, Loeys-Dietz, VEDS, and other genetic aortic conditions, and their families.

We have great hope, which is grounded in reality.
We are heartened by our advances in research, care, and awareness, and although we understand the many challenges before us, we see a bright future for everyone living with Marfan, Loeys-Dietz, VEDS, and related conditions.

The Marfan Foundation also has high standards for governance. Our Conflict of Interest Policy and Whistleblower Policy reflect this commitment.

How We Help

We tirelessly advance the research for treatments that save lives and dramatically enhance quality of life for affected people.

Through our research grant program, we’ve strengthened a growing community of expert researchers committed to victory over Marfan syndrome and related disorders.

We push the government to fund the research that will improve and save lives.

We facilitate the sharing of knowledge about Marfan syndrome and related conditions through conferences, symposia, and partnerships with governmental agencies and other health organizations.

We continue to move forward research for both Marfan syndrome and related conditions because advances in fighting Marfan syndrome helps us take steps toward victory in related conditions—and vice versa.

We provide a supportive community for everyone affected by Marfan syndrome, Loeys-Dietz, VEDS, and related conditions.

Individuals, family members, medical professionals, and other healthcare providers can access information about Marfan syndrome, Loeys-Dietz, VEDS, and related conditions on our website, over the phone, or via email.

Special resources are available for children, teens, parents, teachers, nurses, and other specialized groups.

Our active volunteer network organizes support for families who are dealing with Marfan syndrome and raises money and awareness in local communities nationwide.

Our annual conference brings together the entire community for information and resource sharing.

We always have the latest and most accurate information, and we educate everyone—from patients and families to medical professionals and the general public—about Marfan syndrome, Loeys-Dietz, VEDS, and related conditions.

Our mail and email outreach keeps people up-to-date with the latest in care, treatment, research, and opportunities to help.

Our website is a great resource for our entire community, and it’s often the first place newly diagnosed families come to find answers and support.

Our International Community

The Foundation serves people worldwide who have Marfan, Loeys-Dietz, VEDS, and other genetic aortic conditions. We build international partnerships to advance research, provide medical and patient education, and support individuals living with these conditions and their families.

An Award-Winning Foundation

Latest News from the Marfan Foundation

The Marfan Foundation is the primary source for up-to-date and trustworthy information for affected people and their family members, as well as healthcare providers and researchers.

Read here about Foundation news for our community.

Upcoming Events

We hold many events from coast-to-coast and online throughout the year to increase awareness, create connections, provide education, and raise critical funds to support our work.