Jon Rodis | oneedsvoice

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community advocates

Jon Rodis

Community Leader
President Massachusetts Chapter of the Marfan Foundation
Founder and Head, EDS New England/Massachusetts Support Group
Boston, Massachusetts, United States

Jonathan Rodis, who lives with Marfan Syndrome, is the President of the Massachusetts Chapter of the Marfan Foundation. He also founded and chair two Physician Awareness Committees, one for Marfan syndrome and Related Disorders and the other specifically for Ehlers-Danlos syndrome. He also founded and Head the EDS New England/Massachusetts Support Group to provide awareness, support and initiate/promote research for everyone with Ehlers-Danlos syndrome. He chooses name Team Tall to represent many of his Marfan and related connective tissue disorder family and friends throughout New England who have played an integral part in the Marfan Foundation’s Fight for Victory journey.

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