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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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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New VEDS Publication: Vertebral Tortuosity Is Associated With Increased Rate of Cardiovascular Events in Vascular Ehlers-Danlos Syndrome

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…

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