If you suspect Marfan syndrome | The Marfan Foundation

The Marfan Foundation

Know the signs. Fight for victory.

If you suspect Marfan syndrome

Find a doctor

If you suspect that you or a family member may have Marfan syndrome or a related disorder, the first thing to do is find a doctor who is knowledgeable about the condition.

Ideally, look for a medical geneticist, a doctor who specializes in genetic conditions such as Marfan syndrome. A second choice is a cardiologist (heart doctor). Make sure the cardiologist has treated people who have Marfan syndrome and related conditions.

You can find a doctor by:

  • Contacting our Help Center at 800-8-MARFAN (800-862-7326), ext. 126, or support@marfan.org
  • Requesting our coordinated clinic directory
  • Utilizing the National Institute of Health’s (NIH) physician locator to find a knowledgeable geneticist or cardiologist in your area
  • Making an appointment with a geneticist at a university hospital
  • Asking your primary doctor for a referral
  • Calling the doctor referral service at your local hospital
  • Calling your insurance provider

Compile a health history

Then, compile a health history of you and your family. We created a Family Health History Packet that you can fill out and save to your computer for regular updating. In addition, the U.S. Department of Health and Human Services offers an internet-based family health history tool that also may be helpful. These resources ask you about:

  • Your past illnesses, operations and hospitalizations
  • Medications you are taking
  • Reasons why you think you might have Marfan syndrome
  • Family members who have, or might have, Marfan syndrome
  • Family members who have died of heart problems

Reach out for support

If you think you or a family member may have Marfan syndrome or a related disorder, this can be a scary time. The Marfan Foundation is here for you, please contact us.

  • We offer phone and online support groups for families coping with Marfan syndrome and related disorders. Email us to find out how.
  • Our active volunteer network provides social support for families who are dealing with Marfan syndrome and related disorders.
  • Our Facebook page and our online community offer an opportunity to connect with others affected by these conditions 365 days per year.