Patient Resources | The Marfan Foundation

Patient Resources

Here is a complete listing of all resources we offer for free to patients and families. These materials provide extensive information about Marfan syndrome and related disorders to help you understand your diagnosis. You may also want to share them with your healthcare providers. If you have questions, please contact our help center at support@marfan.org or 800-8-MARFAN, ext. 126.

Please check back regularly to check for new resources.

PRIMARY RESOURCES

Directory of Medical Institutions (Clinic Directory) A Guide to Marfan Syndrome and Related Disorders

MARFAN SYNDROME

Marfan Syndrome: The Basic Facts Marfan Syndrome Diagnosis
Heart and Blood Vessels Nervous System
Bones and Joints Eyes
Lungs Teeth
Skin Cardiac Surgery

RELATED DISORDERS

Loeys-Dietz Syndrome Ectopia Lentis Syndrome
Vascular Ehlers-Danlos Ehlers-Danlos Hypermobility Type
Beals Syndrome Familial Thoracic Aortic Aneurysm and Dissection
Bicuspid Aortic Valve MASS Phenotype
Shprintzen-Goldberg Syndrome Stickler Syndrome

FOR YOUR DOCTOR

Endovascular Repair Personalized External Aortic Root Support
Endocarditis Prophylaxis Role of Genetic Testing

PATIENT CARE

Family Health History Emergency Preparedness Kit
Emergency Alert Card Download Family Planning and Pregnancy
NEW! Physical Activities Guidelines Genetic Testing and Marfan Syndrome

RESOURCES FOR SCHOOLS

Need-to-Know Information for Teachers Need-to-Know Information for the School Nurse

RESOURCES FOR TEENS & KIDS

Teens and Marfan syndrome Marfan Syndrome: A-Z
Marfan Does Not Mean Martian

RESOURCES FOR PARENTS

Parent Toolkit