Our community of experts estimates that nearly half the people who have Marfan syndrome, don't know it.
The Marfan Foundation
The Marfan Foundation, founded in 1981, works to save lives and improve the quality of life for people with genetic aortic and vascular conditions, including Marfan syndrome, Loeys-Dietz syndrome, VEDS (Vascular Ehlers-Danlos syndrome). Our vision is a world in which everyone with genetic aortic and vascular conditions can live the4ir best life.
Since 2019, the Foundation has expanded its commitment to the conditions related to Marfan, adding divisions for VEDS (The VEDS Movement) and Loeys-Dietz (Loeys-Dietz Syndrome Foundation). In addition, the Foundation is now home to the GenTAC Alliance, a community of scientists, physicians, and healthcare professionals focused on advancing care for all forms of genetic aortic and vascular conditions.
The Marfan Foundation serves its communities through comprehensive patient support, education, and research programs. Our reach extends beyond the borders of the US, with programming and support for the international patient community as well.
Our education and awareness programs focus attention on the need for accurate, early diagnosis and proper treatment of Marfan syndrome, VEDS, Loeys-Dietz, and other genetic aortic and vascular conditions. Educational resources are designed for diverse constituencies, ranging from children, teens, families, and individuals; to school nurses and coaches, emergency medicine professionals, genetic counselors, and the many medical specialties that play a role in diagnosis and treatment of these conditions. Improving quality of life is a key focus.
We have increased our impact around the world through our website, which is now accessible in 11 languages; new fact sheets in Italian, German, and French (in addition to our offerings in English and Spanish); an annual Spanish Summit (held online) that attracts patients and families from many Spanish-speaking countries; and our Second International Patient Meeting, held in Paris in August 2022.
The Foundation’s Help & Resource Center, managed by a registered nurse and a clinical licensed social worker, gives reassuring comfort and life-saving support to our constituents every day. Through personalized one-on-one service, the Help & Resource Center disseminates crucial information such as a directory of institutions that have experience and expertise in Marfan syndrome, LDS, and VEDS, guidelines for families and schools, and important details on healthcare coverage and disability. The Help & Resource Center also serves as a valuable resource for medical professionals, some of whom may have little clinical experience with Marfan syndrome, LDS, and VEDS. The Help & Resource Center fields questions from physicians, genetic counselors, nurses, social workers, and other specialists seeking information on diagnosis and treatment as well as issues related to insurance, social security, legal, education and vocational problems. Extensive information is also available for cardiologists, orthopedists, ophthalmologists, and other professionals who look to the Foundation for management guidelines in their specialty areas.
In addition to the individual support we provide, we also offer virtual support groups for different audiences. And, to support our kids and teens, we hold Camp Victory for Families and Camp Victory for Kids, giving them an opportunity to have normal childhood experience in a safe environment.
Another signature program the Foundation holds is Walk for Victory, which takes place in more than 20 cities around the country each year. This fun, family-friendly event brings the community together so they can meet others with the same condition and members of the local healthcare community. Walk for Victory is a critical fundraiser for the Foundation, but – even more than that - the connections created at each Walk for Victory are priceless.
Since the inception of its research grant program in 1989, the Foundation has provided critical seed money to established scientists and has successfully enhanced the pipeline of young researchers who are interested in genetic aortic and vascular conditions. The research we have supported has helped reduce life-threatening problems related to Marfan syndrome and related conditions, identified treatments that have improved quality of life, and have helped people live longer, fuller lives. Marfan Foundation-funded research has found and continues to find new therapeutic targets and treatments that reduce the most life-threatening aspects of Marfan syndrome, LDS, VEDS, and related conditions. With the addition of the GenTAC Alliance to our family, we have a broader scientific arm of stakeholders who are the leading researchers and clinicians on the entirety of genetically triggered aortic aneurysm conditions.
The foundation is now at a crucial juncture where we can more strategically focus on transformational science and aim for cures for these conditions. It just awarded its first Everest Award, which was designed to promote longer, multi-disciplinary, multi-institutional collaborative grants that will help us reach these goals. The Everest Award is the Foundation’s largest grant mechanism. It can provide up to four years of funding for a total of $880,000 if yearly milestone goals are met based on evaluation by the Scientific Advisory Board.