Marfan World was first known as The International Federation of Marfan Syndrome Organizations (IFMSO). It was founded in 1992, in San Francisco, California, U.S.A., at the Hotel Nikko during the 2nd International Marfan Research Symposium. A number of newly formed Marfan voluntary organizations were invited to participate. Participants from six countries were in attendance including Priscilla Ciccariello, United States, (The National Marfan Foundation), Yvonne Flemal-Jousten, Belgium (Association Belge du Syndrome de Marfan), Geraldine Duran and Maria Luisa Duran, Mexico (Sindrome de Mexico, A.C.), Aeneas Lanc, (Canada Marfan Association), Devin Gill, Germany, (Marfan Hilfe (Deutschland) e. V.), and Diane and Robin Rust, United Kingdom, (Marfan Association UK). The attending organizations agreed to form the International Federation of Marfan Syndrome Organizations (IFMSO). Since its inception, the group formally meets at the International Marfan and Related Conditions Research Symposiums which are held every 4-5 years.
At the 9th International Marfan and Related Conditions Research Symposium in 2014, it was decided to change the name from IFMSO to Marfan World.