A Dutch VEDS natural history was recently published. The article provides a comprehensive look at the natural history of Vascular Ehlers-Danlos syndrome (VEDS) in a Dutch cohort, involving 142 patients. The study found that males, and those with specific gene mutations or distinctive physical characteristics, are at a higher risk of experiencing serious complications at an earlier age. Major…
We are excited to announce a special event for our community and healthcare professionals with an interest in Vascular Ehlers-Danlos syndrome (VEDS). Dr. Hal Dietz, a leading figure in VEDS research, will be answering your questions in a live virtual Q&A session.
As we navigate through the holiday season, a time of joy and togetherness, we’re also reminded of the challenges and hardships that can accompany these days. It’s a period that can bring a mix of emotions, especially for those in our VEDS community facing health struggles or remembering loved ones. Acknowledging Our Community’s Resilience This season, we take a…
As we continue to advance our understanding of Vascular Ehlers-Danlos syndrome (VEDS) and seek effective treatments, it’s crucial to stay updated on the progress of ongoing human trials. Here are the latest developments in two key trials that hold promise for our community: Celiprolol Trial Update: In a significant industry development, Acer Therapeutics was acquired by Florida-based Zevra Therapeutics,…
Tom was convinced or was maybe convincing himself, that he did not have VEDS, couldn’t have VEDS. He had played football, did heavy lifting, worked outdoors climbing and lugging lumber, and never had anything go wrong. Additionally, he believed testing was worthless because there was no treatment, no cure. He figured having the diagnosis meant living life as a…
“While having VEDS has been really scary, we’ve felt very lucky as well, to be a part of such a friendly and compassionate community. Every event we’ve been to through The VEDS Movement has been a great experience for our family. Zee, who is 6, has been able to form lasting friendships at camp. We’re happy he has friends…
We are excited to introduce two new resources aimed at empowering the VEDS community and educating healthcare providers. These tools can significantly improve the quality of care you receive. 1) Hospital Sign for VEDS Inpatients Download A crucial tool for our VEDS community members during hospital stays. This sign will alert healthcare workers about the VEDS diagnosis and provide…
Authored by multiple members of our professional advisory board, this study investigates how twisted or curved vertebral arteries (the arteries supplying blood to the brain), termed “vertebral tortuosity,” may relate to blood vessel, hollow organ, and lung issues in people with Vascular Ehlers-Danlos syndrome (VEDS). Summary: The research found that increased twisting of these arteries is linked to a higher rate…
Ryan Rodarmer, MS has been selected by The Marfan Foundation to lead The VEDS Movement. Ryan has a BS Degree in Biology and a Masters in Genetic Counseling. He is also a survivor of a type A aortic dissection due to hereditary thoracic aortic disease. As a genetic counselor Ryan has educated, advocated for and comforted many families affected…
The Marfan Foundation is honored to receive a grant from Global Genes to support mental health programming and initiatives at the Foundation’s Conference in Chicago, July 13-16, 2023. This is the first time Global Genes has offered RARE Mental Health Impact Grants, designed to improve the health and mental well-being of the communities served. The Foundation is one of…
