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New VEDS Publication: Vertebral Tortuosity Is Associated With Increased Rate of Cardiovascular Events in Vascular Ehlers-Danlos Syndrome

October 13, 2023
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VEDS Move More September Instagram post graphic promoting physical activity for VEDS patients

Authored by multiple members of our professional advisory board, this study investigates how twisted or curved vertebral arteries (the arteries supplying blood to the brain), termed “vertebral tortuosity,” may relate to blood vessel, hollow organ, and lung issues in people with Vascular Ehlers-Danlos syndrome (VEDS). Summary:   The research found that increased twisting of these arteries is linked to a higher rate…

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New Director Named for The VEDS Movement

April 18, 2023
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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

March 24, 2023
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Logo or announcement graphic for Global Genes Mental Health Impact Grant

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

March 14, 2023
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Promotional graphic 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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Important Announcement from The VEDS Movement

February 21, 2023
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Graphic announcement about Katie's departure from The VEDS Movement

Greetings…. It is with mixed emotions we announce that Katie Wright will be leaving the Foundation next month to pursue other opportunities.  From its inception, The VEDS Movement has excelled under Katie’s leadership, Jo’s terrific support, a great community, and the commitment of the Foundation and our PAB to The VEDS Movement.  And, Katie’s knowledge, commitment, enthusiasm, and creativity…

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The Foundation Announces Largest Research Grant in Its History

December 16, 2022
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The Marfan Foundation has awarded its largest research grant in history, the Everest Award, as well as $600,000 in other new grants to physicians/scientists as part of its Research Grant program, bringing current total grant funding to $1,285,500.  “Research funding from the Foundation has provided critical seed money to established scientists and has successfully enhanced the pipeline of researchers…

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Statement on Aortic Aneurysm Reflecting on the Death of Grant Wahl: Clinical Urgency and Guidance

December 14, 2022
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The Marfan Foundation is saddened to learn that journalist Grant Wahl has died due to complications of an ascending thoracic aortic aneurysm. Diagnosed, this condition can be treated if people and their health professionals know the risk and manageable complications. The Foundation has expressed direct condolences to the Wahl family. His loss to family, friends, community, and professionals was heartbreaking….

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Las inscripciones están Abiertas para la Cumbre sobre el Síndrome de Marfan y Condiciones Relacionadas

December 13, 2022
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Ya está abierta la inscripción para la Segunda Cumbre Anual de la Fundación Marfan: información educativa sobre Marfan, Loeys-Dietz, VEDS y condiciones relacionadas para pacientes y familias. Esta conferencia será virtual, completamente en español y tendrá lugar el 21 de enero de 2022, de 08:30 a 13:00 hora del este. Se realizará de manera virtual para que pueda verse…

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VEDS Emergency Awareness Project Update: American Academy of Emergency Medicine Approves VEDS CME Course Created by The VEDS Movement and the Sullivan Group

December 5, 2022
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The VEDS Movement continues to make strides in medical education about Vascular Ehlers-Danlos syndrome (VEDS). Educating healthcare professionals in hospital emergency departments is a high priority because too often people with VEDS have sudden medical complications that can be deadly if they are not identified and treated quickly. As part of The VEDS Movement’s targeted outreach efforts, the American…

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New VEDS Research Study: Parental Decision-Making Process and Post-Test Communication Around Predictive Genetic Testing for Children for Vascular Ehlers Danlos Syndrome

November 8, 2022
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Researchers at the MGH Institute of Health Professions are asking you to consider participating in the online Mass General Brigham Institutional Review Board (IRB) approved research study: “Parental Decision-Making Process and Post-Test Communication Around Predictive Genetic Testing for Children for Vascular Ehlers Danlos Syndrome” Predictive genetic testing is genetic testing done for an individual who does not currently have symptoms…

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