There are numerous foundations and associations dedicated to supporting individuals and families affected by Marfan syndrome. These organisations are a valuable source of information and practical and emotional support.

International Federation of Marfan Syndrome Organizations (IFMSO)

National Patient Organisations





Victoria, Australia Marfan Association Victoria Inc.
Belgium Association Belge du Syndrome de Marfan
Brazil The Fundação Marfan Brasil – (Brasil Marfan Foundation
Denmark Danish Marfan Association
Finland Finnish Marfan Association
France Association Française du Syndrome de Marfan (A.F.S.M.)
Germany Marfan Hilfe (Deutschland) e.V.
Ireland Marfan Syndrome Support Group Ireland, Ltd
Italy Associazione Vittorio
Japan Marfan Network Japan (MNJ)
(Japanese only)
Japan Marfan Association (JAMAA)
Mexico Sindrome de Marfan de Mexico A.C.
Netherlands Contactgroep Marfan Nederland
Norway Marfanforeningen co/FFO
Peru La Asociación Peruana del Síndrome de Marfan (APSIM)
Poland Polish Marfan Association
Slovakia Slovak Marfan Association
Spain SIMA Asociación de Afectados Síndrome de Marfan
Sweden Svenska Marfanföreningen
Switzerland Marfan Stiftung Schweiz
United Kingdom Marfan Trust
United States Marfan Foundation