Parents have asked…we’ve responded! Kids Club, our new virtual group, is for children ages 9-12 with Marfan syndrome, Vascular Ehlers-Danlos Syndrome (VEDS), Loeys-Dietz syndrome, and related genetic aortic and vascular conditions. It is designed to increase opportunities for social interaction with others who have a similar diagnosis. The Kids Club will run for approximately 60 minutes and will be…
The Marfan Foundation has made the 60 English presentations given during its International E3 Summit available on its YouTube Channel. The talks – which were given by internationally renowned experts on Marfan, Loeys-Dietz, and VEDS – cover all aspects of these conditions, from the genetics and diagnosis, to vascular and cardiac surgery, to the treatment of other body systems impacted…
The Marfan Foundation announced today a statement from its Professional Advisory Board (PAB) about the use of the COVID-19 vaccine for people with Marfan, VEDS, Loeys-Dietz, and Related Genetic Aortic and Vascular Conditions. The PAB, which consists of the country’s leading experts on these conditions, recommends that all approved groups get vaccinated for COVID-19. The position of the PAB…
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…
