We created a template referral letter for you to use to simplify the process when you are referring a patient to a specialist for further evaluation or testing for the diagnosis of Marfan syndrome or a related disorder. The letter makes it easy for you to note the features you observed that raise your suspicion of these disorders.
Overview of Cardiac Management in Marfan Syndrome Aortic dissection is the major cause of premature morbidity and mortality in Marfan syndrome. Aortic root aneurysm or dissection and ectopia lentis are cardinal features of Marfan syndrome based on the 2010 Gent nosology. For the full diagnostic criteria, please visit MarfanDX.org. Cardiac features that may be seen […]
Loeys-Dietz syndrome is a genetic disorder of connective tissue. Because connective tissue is found throughout the body, Loeys-Dietz syndrome features can occur in the heart, blood vessels, bones, joints, skin, and internal organs, such as the intestines, spleen, and uterus. Some Loeys-Dietz syndrome features are easy to see. Others features, such as heart and blood […]
This is for faculty investigators for $100,000 over 2 years ($50,000 per year), to explore an innovative concept in “translational” science that has applicability to improving human health. Examples could include fundamental research, diagnostic tests, biomarkers, biomedical engineering advances, and imaging advances. Collection of data for improved evidence-based medical guidance are of great interest. Deadlines: […]
Join us in the fight for victory over Marfan syndrome and related conditions and help us create a brighter future for everyone living with these conditions.
