News

From Survivor to Advocate and a Roar for Aortic Awareness

The Rodarmer family smiling for a portrait outdoors. A man, woman, teenage boy, and younger girl are posed together in front of green trees.

Editor’s Note: The following post was written by our Director, Ryan Rodarmer, and was originally featured by The Marfan Foundation to highlight Aortic Dissection Awareness Week. Ryan Rodarmer, Director of The VEDS Movement I thought I had everything under control, but my body had other ideas—a fact I learned on the morning of April 9, 2019. For nearly fifteen…

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Meet the Co-Chairs of The VEDS Movement Steering Committee: Dominick Corso & Kristi Posival

VEDS Steering Committee co-chairs Dominick Corso and Kristi Posival.

Strengthening connection, amplifying voices, and moving forward—together. About the Leaders Kristi and Dominick bring complementary strengths: decades‑deep lived experience and mentorship; fresh energy grounded in gratitude to the community; and a shared commitment to practical action. They’re focused on clear communication, collaboration with clinicians and researchers, and building an inclusive community where every person impacted by VEDS can find…

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Staying Informed: Recent Research Advances in VEDS Treatment

Prescription pills symbolizing research into medications for VEDS treatment, including celiprolol and irbesartan.

Introduction  For those living with Vascular Ehlers-Danlos Syndrome (VEDS) or supporting loved ones with this condition, staying updated on research developments can provide valuable information. New studies continue to emerge that help us better understand how medications might reduce the risk of serious complications in VEDS. Here, we share summaries of two recent research articles that provide important insights…

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Insights into the Natural History of Vascular Ehlers-Danlos Syndrome (VEDS): Dutch Cohort Study

Screen shot of title and authors of scientific article.

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…

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Finding Support at the Holidays & Beyond

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…

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Research & Human Trials Update

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,…

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When Time Won’t Stand Still

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…

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Comfort at Camp

“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…

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Introducing New VEDS Resources

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…

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