My Diagnosis Can Help Save Future Generations

I’ve been through so much in the past eight years, and I’m still here. I want to share my story to encourage others to listen to their bodies and not give up. Keep searching until you find the appropriate medical help for yourself and your family members. It started in 2011 when I began having major colon and stomach…

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Professional Advisory Board Issues New Statement on COVID-19 Vaccines for Children

The Foundation’s Professional Advisory Board, which is comprised of the country’s foremost experts on Marfan, Loeys-Dietz, and VEDS, just shared new recommendations on COVID-19 vaccines for children with these conditions. The statement follows the FDA’s recent emergency authorization of the Pfizer COVID-19 vaccine for children, ages 5-12. The Professional Advisory Board continues to recommend that all eligible persons get…

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The Marfan Foundation Announces Updated Research Grant Program to Facilitate Transformational Science

woman in lab coat working in a lab

The Marfan Foundation, which has funded 158 research grants and initiatives since 1989, is proud to announce it has updated its research grant program to have a more significant impact on scientific advances to improve the lives of people with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. The new grants are designed to encourage and support…

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The VEDS Collaborative is Joining The VEDS Movement

The VEDS Collaborative, the community of stakeholders committed to patient-centered research in Vascular Ehlers-Danlos Syndrome (VEDS), will be powered by The VEDS Movement beginning August 1, 2021. The VEDS Collaborative was initiated in 2017 by Dr. Sherene Shalhub at the University of Washington, in collaboration with Dr. Peter Byers, and John and Dave DeMasi, to bring together researchers, individuals,…

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Acer Therapeutics Inc. Announces DISCOVER Clinical Trial for EDSIVO™ (Celiprolol)

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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The Marfan Foundation to Honor Dr. James Black, Dr. Firas Mussa, Barbara Lerman, CPA, and the Legacy of Ann Reinking at Heartworks Across America, on June 24

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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Registration Now Open for The Marfan Foundation’s First-Ever Virtual Annual Conference, July 8-11, 2021

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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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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