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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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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Members of the VEDS Community and The VEDS Movement’s Steering Committee Share Their Experiences with the FDA

On October 7, as part of VEDS Action Month, several of The VEDS Movement’s Steering Committee members met with the FDA for a Patient Listening Session. Patient listening sessions are small, informal, non-regulatory discussions with the FDA about experiences with diseases and disorders. The VEDS Movement reached out to the FDA to request this listening session on behalf of…

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NIH Researchers Launch Study to Understand Health Impacts of COVID-19 on those with VEDS, Marfan, and Loeys-Dietz

Help NIH Researchers understand the health impacts of COVID-19 on people with Marfan, VEDS, and Loeys-Dietz Researchers at the National Institutes of Health (NIH) are interested in how COVID-19 impacts the health of people with Vascular Ehlers-Danlos Syndrome (VEDS), Marfan Syndrome, and Loeys-Dietz. You can help by completing an online survey about your experiences. The survey is open to…

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Tony Yasick, Board Member of The Marfan Foundation, Shares His Story with VEDS in USA Today

Tony Yasick, an anesthesiologist, chair of the Defy Foundation, and Marfan Foundation Board Member, shared his story with Vascular Ehlers-Danlos Syndrome (VEDS), titled, “I ran from my lethal diagnosis for years. Let’s make this rare disease a household word,” in USA Today. The VEDS Movement and The Marfan Foundation are incredibly grateful to Finn Partners for working with Tony…

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