On October 7, as part of VEDS Action Month, several of The VEDS Movement’s Steering Committee members met with the FDA for a Patient Listening Session. Patient listening sessions are small, informal, non-regulatory discussions with the FDA about experiences with diseases and disorders. The VEDS Movement reached out to the FDA to request this listening session on behalf of…
Help NIH Researchers understand the health impacts of COVID-19 on people with Marfan, VEDS, and Loeys-Dietz Researchers at the National Institutes of Health (NIH) are interested in how COVID-19 impacts the health of people with Vascular Ehlers-Danlos Syndrome (VEDS), Marfan Syndrome, and Loeys-Dietz. You can help by completing an online survey about your experiences. The survey is open to…
Tony Yasick, an anesthesiologist, chair of the Defy Foundation, and Marfan Foundation Board Member, shared his story with Vascular Ehlers-Danlos Syndrome (VEDS), titled, “I ran from my lethal diagnosis for years. Let’s make this rare disease a household word,” in USA Today. The VEDS Movement and The Marfan Foundation are incredibly grateful to Finn Partners for working with Tony…
In 2013, I was serving my sixth year in the United States Coast Guard. One day in June we needed to move some 2000lb pipes via a crane. I was on one end of this pipe holding a line and needed to pull on the pipe to keep it from swinging and killing the crane operator. It turned out…
Dominick Corso was diagnosed earlier this year with Vascular Ehlers-Danlos Syndrome (VEDS), and quickly became involved in the community through virtual support groups and by engaging with the online community on Facebook. Just a few weeks ago, Dominick experienced an emergency. While getting ready for a day on a boat with his family, he started feeling pain and discomfort…
When I was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) 10 years ago, following a traumatic vascular event, my family was handed a piece of paper printed off of google and told, “good luck.”I remember thinking, “half a page on the internet is the best they could do?” It is almost impossible to believe now, in the age of the…
New CME for Vascular Ehlers-Danlos Syndrome! A new online course is now available to medical professionals to increase awareness and diagnosis of Vascular Ehlers-Danlos Syndrome (VEDS) among emergency physicians, nurses, and advanced practice clinicians. VEDS, a rare form of Ehlers-Danlos Syndrome, is often misdiagnosed or undiagnosed until a major life-threatening medical event. Individuals frequently describe their long road to…
Ask any parent how they would describe parenting in a couple of words. Some of the responses may be joy, angst, concern, protection, and amusement. But, the most important answer that stands out among the others is often unconditional love. Having a child with a life-threatening condition adds an incredible amount of concern and devotion to the parenting journey….
The Aortic Dissection Collaborative currently has two opportunities for you to provide input on your experiences with aortic dissection: The COVID-19 Survey explores healthcare for aortic dissection during the COVID-19 pandemic.Who is eligible to take this survey? People with or at risk for aortic dissection; family members/care partners of those with or at risk for aortic dissection; and care providers…
The Marfan Foundation and VASCERN, the European Reference Network, are pleased to announce that registration is now open for the first-ever E3 International Summit: Educating, Empowering, and Enriching Our Community. The online event will provide unique access to presentations and live question and answer sessions on Marfan, Loeys-Dietz, VEDS (vascular Ehlers-Danlos), Stickler syndrome, and related conditions. Summit registration is free, but…
