Resource For: Healthcare Professionals
Referral Letter and Features Chart
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.
Know the Signs of an Aortic Aneurysm and Dissection
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, […]
Recommended Criteria for Development of a Marfan Clinic
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.
Patient Care Coordination Instructions
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 […]
Victor McKusick Fellows
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 […]
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Use this form to request printed versions of our fact sheets, brochures, and booklets.
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