Know the Signs, Fight for Victory
People with Marfan syndrome are at up to 250 times greater risk of aortic dissection (a tear or rupture between layers of the aortic wall) than the general population. That’s why it’s important to know the signs of an aortic dissection and what to do. Symptoms of aortic aneurysm may be related to the location, […]
The diagnosis, evaluation, and management of Marfan syndrome and related conditions require health practitioners from multiple disciplines with specialized knowledge, skills, and experience in heritable disorders of connective tissue. Patients and families are best served in clinics with demonstrated interest and expertise in this field.
In order to have better outcomes in the emergency department for people with genetic aortic and vascular conditions, a Patient Care Coordination Note (PCCN), can provide triage nurses and ER physicians, with life-saving information for these rare conditions. This patient care coordination note appears in the upper left hand corner in red, when you open […]
A coordinated clinic is the best place to go for Marfan syndrome and related disorders care. A coordinated clinic provides expertise in all Marfan-related specialties: genetics, cardiology (heart), ophthalmology (eyes), and orthopedics (bones and joints). Download our clinic directory, which is comprised of institutions around the country that treat Marfan syndrome and related conditions. We […]
This award is for $150,000 for an MD and $100,000 for a PhD, over two years. It is designed to support postdoctoral fellows embarking on a scientific career in biomedical research related to Marfan syndrome or any genetic aorta or vascular conditions within the Foundation’s scope of interest. Fellows up to postgraduate year six are […]
The Career Development Award will support two-year $100,000 grants ($50,000 per year) in basic, translational, or clinical research studying any discipline involved in Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos syndrome, and other related conditions. This grant program is designed to support investigators early in their career to derive preliminary data in a key concept area […]
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