The Marfan Foundation this week announced that it is awarding $675,000 to seven physicians/scientists as part of its 2020 Research Grant program. This brings the total amount currently being funded — including the second year of two-year grants awarded last year and other research projects — to $1.4 million. The new grants are one fellowship award, one early investigator…
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…
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…
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…
