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Tag: Awareness

VEDS Action Day: The “V” in VEDS Matters

October 17, 2025
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| Community Stories, News
Maia speaks into a microphone at the Chicago Walk for Victory, raising awareness for Vascular Ehlers-Danlos syndrome.

Please note: this story discusses and depicts emergency medical experiences. Guest blogger Maia Fleener is living with VEDS and volunteers with the VEDS Movement as an advocate and voice of lived experience. For me, this day is deeply personal. I live every day with Vascular Ehlers-Danlos syndrome (VEDS) – a rare genetic condition that affects the body’s blood vessels,…

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Aortic Dissection Survivor Story: From Survivor to Advocate and a Roar for Awareness

September 19, 2025
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| News
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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