The Marfan Foundation

The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and other genetic aortic conditions - We pursue the most innovative research and make sure that it receives proper funding. - We create an informed public and educated patient community to increase early diagnosis and ensure life-saving treatment. - We provide relentless support to families, caregivers, and healthcare providers. We will not rest until we've achieved victory - a world in which everyone with Marfan syndrome or a related disorder receives a proper diagnosis, gets the necessary treatment, and lives a long and full life.

http://www.marfan.org