Patient Resources

Genetic Syndrome Foundation Websites:

Marfan syndrome: National Marfan Foundation

Loeys-Dietz syndrome: Loeys-Dietz Syndrome Foundation

Ehlers-Danlos syndrome, vascular type: The Ehlers-Danlos SocietyEDS Network CARES Foundation

Turner syndrome: Turner Syndrome Society of the United States

 Genetics Resources:

For information on DNA, genes, and how they work: Genetics Home Reference

To find a local genetics provider in your area, visit the National Society of Genetic Counselors

Aortic Aneurysms/Dissections:

For a comprehensive overview of symptoms, signs, management, and outcomes: Click here

For recommendations regarding lifestyle and work in patients with thoracic aortic disease: IRAD Recommendations

To access a copy of the Guidelines for the Diagnosis and Management of Patients With Thoracic Aortic Disease: Click here

 


 

 

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