Know the Signs, Fight for Victory

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The Marfan Foundation

22 Manhasset Avenue
Port Washington, NY 11050

Tel: 516.883.8712
800.8.MARFAN

Media inquiries: media@marfan.org

Medical question? Ask our registered nurse.

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Frequently Asked Questions

If you have a medical question, please submit it to our Help & Resource Center.

  • What should you do if you think you might have Marfan syndrome or a related condition?

    Marfan syndrome is a serious, potentially life-threatening condition, and an early, accurate diagnosis is essential, not only for people with Marfan syndrome, but also for those with related conditions. If you suspect that you or a loved one has Marfan, find a doctor who is knowledgeable about the condition and seek an evaluation for a diagnosis, which can include an examination of several body systems, family medical history, and genetic testing.

    More information about the evaluation, including how to find a doctor and get support >

  • How can I find doctors who are experts in Marfan syndrome and related conditions?

    A coordinated clinic is the best place to go for Marfan syndrome and related conditions care. A coordinated clinic provides expertise in all Marfan-related specialties: genetics, cardiology (heart), ophthalmology (eyes), and orthopedics (bones and joints).

    If there is not a coordinated clinic in your area, we recommend making an appointment with a geneticist or cardiologist because they are usually the specialists with the most expertise in these conditions and can provide appropriate referrals to other necessary specialists.

    More information is available, including a list of hospitals with experience and expertise >

  • How can I connect with others who have the same diagnosis?

    The Marfan Foundation offers several ways for you to connect with community, ranging from large events to one-on-one connections. Our Walks for Victory, held around the country, can provide you with a warm and welcoming community. Additionally, we offer several virtual support groups as well as a mentor program.

    More information about this opportunities >