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.
Hypermobile Ehlers-Danlos is one of six different types of Ehlers-Danlos syndromes, and it is the most common. Hypermobile Ehlers-Danlos is a connective tissue disorder that predominantly affects the skeletal system. It is characterized by loose joints, often associated with chronic (long-term) joint pain. What other names do people use for Hypermobile Ehlers-Danlos? What are the […]
Le syndrome de Marfan est une maladie grave dont certaines complications peuvent être mortelles. Les progrès réalisés dans les soins médicaux permettent désormais aux personnes atteintes du syndrome de Marfan d’avoir une espérance de vie normale si elles reçoivent un diagnostic et un traitement adapté.
MASS Phenotype is a connective tissue disorder that is similar to Marfan syndrome in that people with the condition have the similar Mitral valve, Aorta, Skin, and Skeletal features. People with MASS phenotype do not have lens dislocation, but rather myopia (nearsightedness), and do not show progressive and dangerous aortic root enlargement, hallmark features of Marfan syndrome. What other […]
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.
