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 condition 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 & Resource Center.
Please check back regularly to check for new resources.
PRIMARY RESOURCES | |
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Directory of Medical Institutions (Clinic Directory) | A Guide to Marfan Syndrome and Related Disorders |
MARFAN SYNDROME | |
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Marfan Syndrome: The Basic Facts | Marfan Syndrome Diagnosis |
Heart and Blood Vessels | Nervous System |
Bones and Joints | Eyes |
Lungs | Teeth |
Skin | Cardiac Surgery |
Neonatal Marfan |
FOR YOUR DOCTOR | |
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Endovascular Repair | Personalized External Aortic Root Support |
Endocarditis Prophylaxis | Role of Genetic Testing |
PATIENT CARE | |
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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 | |
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Need-to-Know Information for Teachers | Need-to-Know Information for the School Nurse |
RESOURCES FOR TEENS & KIDS | |
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Teens and Marfan syndrome | Marfan Syndrome: A-Z |
Marfan Does Not Mean Martian |
RESOURCES FOR PARENTS | |
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Parent Toolkit | |