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 conditions.
Together, We are Fighting for Victory
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.
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.
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.
VEDS Partners and Spouses
Lungs Research Webinar
Mid-Atlantic Regional Chat
Teen Game Night
Support for Young Adults with Marfan, VEDS, LDS and related conditions
Midwest Regional Chat
Coping with Grief and Loss
Genetic Testing: US and Europe