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 or call 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 FactsMarfan Syndrome Diagnosis
Heart and Blood VesselsNervous System
Bones and JointsEyes
LungsTeeth
SkinCardiac Surgery
Neonatal Marfan

RELATED CONDITIONS

 
Loeys-Dietz SyndromeEctopia Lentis Syndrome
Vascular Ehlers-DanlosEhlers-Danlos Hypermobility Type
Beals SyndromeFamilial Thoracic Aortic Aneurysm and Dissection
Bicuspid Aortic ValveMASS Phenotype
Shprintzen-Goldberg SyndromeStickler Syndrome

FOR YOUR DOCTOR

 
Endovascular RepairPersonalized External Aortic Root Support
Endocarditis ProphylaxisRole of Genetic Testing

PATIENT CARE

 
Family Health HistoryEmergency Preparedness Kit
Emergency Alert Card DownloadFamily Planning and Pregnancy
NEW! Physical Activities GuidelinesGenetic Testing and Marfan Syndrome

RESOURCES FOR SCHOOLS

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

RESOURCES FOR TEENS & KIDS

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

RESOURCES FOR PARENTS

 
Parent Toolkit