News

Acer Therapeutics Inc. has announced it will be conducting a pivotal clinical trial in patients with COL3A1+ vascular Ehlers-Danlos Syndrome (VEDS) called the DiSCOVER Trial (Decentralized Study of Celiprolol On VEDS-Related Event Reduction). The study is planned to be a phase 3, randomized, double-blind, placebo-controlled, decentralized clinical trial.  Decentralized means that travel is not likely required, patients can participate…

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Heartworks Across America, The Marfan Foundation’s signature event, will honor two incredible doctors, an outstanding volunteer leader, and the legacy of a Tony Award-winning actor, dancer, and choreographer on June 24, when Heartworks goes virtual. The medical honorees who will receive a Hero with a Heart Award are Dr. James Black, Chief of Vascular Surgery and Endovascular Therapy at…

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The Marfan Foundation is pleased to announce that registration is now open for our first-ever Virtual Annual Conference, July 8-11, 2021. Based on the input of our volunteer leaders, the emphasis of this year’s conference is on more increased interaction and more opportunities to meet other people. The four-day event offers innovative ways to reconnect with old friends and make new…

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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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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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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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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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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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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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