Know the Signs, Fight for Victory


Upcoming International Events

The Marfan Foundation is dedicated to the education and support of our global community of people living with Marfan and related conditions.

The Foundation was a founding member of Marfan World (formerly known as the International Federation of Marfan Syndrome Organizations) and continues its commitment to:

  • Share current, accurate information about Marfan syndrome and related conditions worldwide.
  • Facilitate international communication among medical professionals who serve the Marfan, Loeys-Dietz, and VEDS community.
  • Facilitate communication between international organizations representing individuals and families affected with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions.
  • Support and foster global research initiatives.
  • Convene international meetings to facilitate research and bring the global patient community together.

Resources in Multiple Languages

We are happy to provide information about Marfan syndrome and how it affects the body in several languages. We offer resources that you can download that cover the following aspects of Marfan syndrome: diagnosis, basic facts, bones and joints, cardiac surgery, eyes, lungs, skin, teeth, family planning, and physical activity.

Aortic Disease Awareness Week

Aortic Disease Awareness Week is a focused effort by physicians, researchers, patients, family members, and many organizations to raise awareness about aortic disease around the world every September. It is dedicated to create community for people who care about aortic disease, celebrate survivors, and share information that can be life-saving for people who are at risk.

Patient Alliance at IndoUSrare

The Marfan Foundation is a member of the Patient Alliance at IndoUSrare, an organization that educates, empowers, and advocates for diverse patients with rare diseases in the US, India, and globally by building collaborative bridges between the Western and Eastern geographic silos for stakeholders of rare diseases to maximize diversity, equity, and inclusion in research and development for accelerating the development of diagnostics and therapies. The Foundation will be developing joint programs with IndoUSrare to increase awareness, education, and empowerment for those with Marfan, LDS, and VEDS in India.

YouTube Resources

2021 Cumbre de la Fundación Marfan
2022 Cumbre de la Fundación Marfan
2024 Cumbre de la Fundación Marfan
Videos In Spanish
Videos In French
Videos In German