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Family Planning and Pregnancy
Decisions about family planning can be difficult and very emotional when one of the prospective parents has a genetic disorder, such as Marfan syndrome. Before making any decisions, parents should understand the many options now available, as well as the potential risks to the child and the mother. A genetic counselor or the nurse in […]
Emergency Preparedness Kit
Emergency Preparedness Kit This kit is your tool to help you be prepared in the event of an emergency. We suggest putting the completed packet in a brightly colored envelope or folder so it is easy to find. At home, keep it near the door so it is handy for Emergency Medical Services (EMS) and […]
Emergency Alert Card
Download a PDF of our Emergency Alert Card which you can carry in your wallet.
Need-to-Know Information for the Teacher
Marfan syndrome is a life-threatening genetic disorder that causes some physical problems that can interfere with a student’s ability to perform in the classroom without modifications. These physical limitations cause many students living with the disorder to feel isolated and alone. We hope this guide enables educators to: Understand the basics of Marfan syndrome and […]
Video Preguntas y Respuestas
Aquí están algunas de las preguntas más frecuentes sobre el síndrome de Marfan y trastornos relacionados con las respuestas proporcionadas por el Dr. Juan Bowen, Mayo Clinic, quien es un experto médico líder en el síndrome de Marfan y trastornos relacionados.
Info on FBN1 Testing
Findings in an FBN1 screening that should be considered causal in making the diagnosis of Marfan syndrome.
Request Materials
Use this form to request printed versions of our fact sheets, brochures, and booklets.
Materials Request