News

Upcoming Clinical Trial Announced for Vascular Ehlers-Danlos Syndrome

Today, Aytu BioPharma announced their intention to conduct a drug therapy trial for Vascular Ehlers-Danlos Syndrome. The VEDS Movement and The Marfan Foundation are thrilled to support this effort to investigate a medication that may potentially reduce life-threatening medical complications in VEDS. We anticipate providing education and awareness to physicians, individuals and families about details of this trial as…

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Fibromuscular Dysplasia (FMD) and Vascular Ehlers-Danlos Syndrome (VEDS) – What is the difference?

a picture of the vasculature of a leave with beads of water on it (representing the "string of beads" associated with fibromuscular dysplasia (FMD)

What are Fibromuscular Dysplasia (FMD) and Vascular Ehlers-Danlos Syndrome (VEDS), and how are they each diagnosed? Fibromuscular Dysplasia Fibromuscular Dysplasia, commonly called FMD, is a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur….

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Save the Date! Virtual Annual Conference is July 8-11, 2021

Get ready to reboot your connections with the Marfan, Loeys-Dietz, VEDS, Stickler, and our related genetic aortic and vascular conditions community at our 2021 Virtual Annual Conference, scheduled for July 8-11, 2021.  From anywhere in the world, you will hear the latest updates on genetic aortic and vascular conditions, have access to medical presentations from the world’s leading experts…

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My High Risk Pregnancy with VEDS

My story with Vascular Ehlers-Danlos Syndrome (VEDS) began in 2007, after a maxillary artery emergency and a thoracic aneurysm left me with more questions and no answers. For nine years, I sought out several medical consultations, spent countless hours doing my own research, and ultimately found a supportive physician and colleague who referred my daughter and me for genetic…

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The Marfan Foundation Launches Kids Club, a Virtual Social Group for Children

Parents have asked…we’ve responded! Kids Club, our new virtual group, is for children ages 9-12 with Marfan syndrome, Vascular Ehlers-Danlos Syndrome (VEDS), Loeys-Dietz syndrome, and related genetic aortic and vascular conditions. It is designed to increase opportunities for social interaction with others who have a similar diagnosis. The Kids Club will run for approximately 60 minutes and will be…

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International E3 Summit Presentations Now Available on YouTube

The Marfan Foundation has made the 60 English presentations given during its International E3 Summit available on its YouTube Channel. The talks – which were given by internationally renowned experts on Marfan, Loeys-Dietz, and VEDS – cover all aspects of these conditions, from the genetics and diagnosis, to vascular and cardiac surgery, to the treatment of other body systems impacted…

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PAB Issues Statement on Covid-19 Vaccine

The Marfan Foundation announced today a statement from its Professional Advisory Board (PAB) about the use of the COVID-19 vaccine for people with Marfan, VEDS, Loeys-Dietz, and Related Genetic Aortic and Vascular Conditions. The PAB, which consists of the country’s leading experts on these conditions, recommends that all approved groups get vaccinated for COVID-19. The position of the PAB…

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The Marfan Foundation Announces 2020 Research Grant Program Award Recipients, Including a Study for VEDS

The Marfan Foundation this week announced that it is awarding $675,000 to seven physicians/scientists as part of its 2020 Research Grant program. This brings the total amount currently being funded — including the second year of two-year grants awarded last year and other research projects — to $1.4 million. The new grants are one fellowship award, one early investigator…

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