To see a full list of our Support Group offerings, please click here.
*Please be sure to check our online calendar for any scheduling changes.*
Join the Genetic Aortic Network on December 12 at 11:00 a.m. ET for a webinar on highlights from “Recommendations for Design, Execution, and Reporting of Studies on Experimental Thoracic Aortopathy in Preclinical Models” (Arteriosclerosis, Thrombosis, and Vascular Biology, 2025).
The Marfan Foundation’s Global Virtual Conference connects people living with genetic aortic and vascular conditions, their loved ones, healthcare providers, and researchers from around the world for a unique event that holistically explores the many facets of life with Marfan, Loeys-Dietz, VEDS, and related conditions.
This webinar will be presented by a panel of medical experts and moderated by Melissa Russo, MD. We will discuss women's issues beyond family planning, including, but not limited to, endometriosis, perimenopause and menopause, hormonal support, and uterine prolapse. There will be time to get your questions answered.
While the content will be tailored to individuals living with Loeys-Dietz syndrome, others with similar genetic aortic and vascular conditions may find it helpful.
What is common vs. what is uncommon? What did we know, and what needs to be addressed? Join an interactive discussion on the current guidelines for Loeys-Dietz syndrome types 1-6 with Johns Hopkins’ Dr. Hal Dietz and Gretchen MacCarrick, MS, CGC.
From adaptive clothing and devices to strengthening exercises and activities, occupational therapy can help support life with Loeys-Dietz syndrome in many ways.
Dr. Dietz discussed the latest research on the genetics of Marfan, LDS, and VEDS in a way that is understandable for individuals and families living with these conditions.
Dr. Dietz discussed the latest research on the genetics of Marfan, LDS, and VEDS in a way that is understandable for individuals and families living with these conditions.
Researchers, Dr. Bart Loeys and Aline Verstraeten will discuss their exciting new research on a novel biomarker for thoracic aortic aneurysm and dissection. They will share why biomarker research is important and its potential impact on the Loeys-Dietz syndrome and connective tissue communities.
Join us for a free webinar to learn about the new ACC/AHA guidelines for the management and treatment of aortic disease and what the new guidelines mean for people with genetic aortic and vascular condition.
The Marfan Foundation’s Science in Paris meeting will take place August 29- September 1, 2022. The goal of the meeting is to bring together national and international researchers and clinicians focused on genetic aortic and vascular conditions, enhancing collaboration and discovery to ultimately benefit patients and families.
This four day event will feature three separate, but connected, scientific meetings on Vascular Ehlers-Danlos Syndrome (Day 1), Marfan, Loeys-Dietz, and related syndromes (Days 2 and 3), and the GenTAC Aortic Summit (Day 4). Clinicians in all disciplines, surgeons, and researchers are welcome to attend.
Please join us for our Second International Patient Symposium, which will feature medical presentations on the diagnosis, medical and surgical treatments, and genetics, as well as the latest research on Marfan, Loeys-Dietz, VEDS, and related genetic aortic and vascular conditions. Register Now!
Join us on February 22, 2021, at 7pm ET for a webinar on Aortic Arch Surgery presented by Dr. Anthony Caffarelli, Director of the Elaine & Robert Matranga Aortic Center at Hoag Hospital in Newport Beach, CA. You will receive a link to the Zoom Webinar via email.
Join us on February 16, 2021, at 7pm ET for a webinar on Open Thoracoabdominal Repair Surgery presented by Dr. Joseph Coselli, Professor, Vice-Chair and Chief, Division of Cardiothoracic Surgery at Baylor College of Medicine. You will receive a link to the Zoom Webinar via email.
Join us on November 19, 2020 at 7pm ET to hear highlights of the GenTAC Aortic Summit 2020 from Kim Eagle, MD, GenTAC Chair, and Josephine Grima, PhD, Chief Science Officer for The Marfan Foundation.
