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…
The Marfan Foundation has announced the addition of four leading medical experts to its Professional Advisory Board (PAB): Adam Bitterman, DO, Mark Lindsay, MD, PhD, Gretchen MacCarrick, MS, CGC, and S. Chris Malaisrie, MD. The Professional Advisory Board is comprised of leading healthcare providers in the areas of Marfan, Loeys-Dietz, VEDS, and related conditions who provide us with professional…
Three-Week Online Program Provides Never-Before Virtual Access to Leading Medical Experts from All Over the World For the first time in its nearly 40-year history, The Marfan Foundation is offering its community an incredible three-week program featuring medical experts from all over the world on an array of topics related to the diagnosis and treatment of Marfan syndrome, Loeys-Dietz…
It’s Ehlers-Danlos Syndrome (EDS) awareness month! We want to take this opportunity to share crucial differences between the most common form of EDS and Vascular Ehlers-Danlos Syndrome (VEDS). EDS is a connective tissue condition that is frequently characterized in the media by “loose joints and soft, stretchy skin.” Articles about celebrities who reveal they have EDS do not usually…
The VEDS Movement is excited to unveil its new logo to the community as it continues to make great strides for everyone impacted by VEDS. According to Katie Wright, director of The VEDS Movement, it is important to highlight the V as it distinguishes the vascular type of Ehlers-Danlos syndrome from the others. This is a critical distinction because…
All of us at The Marfan Foundation and The VEDS Movement have been holding out hope that we would be together this summer for our Boston Annual Conference. We know how valuable it is to our community — for the access to leading doctors and researchers, for the networking opportunities with others, and for the children and teen programming….
