New Director Named for The VEDS Movement

headshot image of Ryan smiling in front of green foliage

Ryan Rodarmer, MS has been selected by The Marfan Foundation to lead The VEDS Movement.  Ryan has a BS Degree in Biology and a Masters in Genetic Counseling.  He is also a survivor of a type A aortic dissection due to hereditary thoracic aortic disease.  As a genetic counselor Ryan has educated, advocated for and comforted many families affected…

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Foundation Receives Mental Health Impact Grant from Global Genes

The Marfan Foundation is honored to receive a grant from Global Genes to support mental health programming and initiatives at the Foundation’s Conference in Chicago, July 13-16, 2023. This is the first time Global Genes has offered RARE Mental Health Impact Grants, designed to improve the health and mental well-being of the communities served. The Foundation is one of…

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Registration is Open for The Marfan Foundation’s 39th Conference in Chicago, July 13-16

The Marfan Foundation, in conjunction with Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern Medicine, will hold its 39th Conference, July 13-16, in Chicago at the Palmer House Hotel. This event brings together hundreds of individuals and families with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and other genetic aortic and vascular conditions from across the country and…

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