Close Window
 
 
Find a Doctor

HOW CAN I FIND A DOCTOR WHO KNOWS ABOUT MARFAN SYNDROME AND/OR RELATED DISORDERS?
Start with the NMF Clinic Directory. The Directory is a list of Marfan syndrome/related disorders clinics that are scattered around the United States. The definition of “Marfan Syndrome Clinic” varies from one medical center to another. When you select a clinic from the directory you need to ask:

  • What services does the clinic offer for the diagnosis and treatment of Marfan syndrome?
  • What specialists does the clinic have to take care of the various body systems affected by Marfan syndrome?
  • How does the clinic coordinate medical care among the needed specialists?
  • What are the costs for care? 
  • Does your medical insurance cover these costs?

The NMF does not certify, recommend or warrant the quality of care provided by any of the institutions listed on the Directory. THE LISTING IS A DIRECTORY AND NOT A REFERRAL SERVICE.

In order to receive an e-mail with the Clinic Directory information, you must register here. After you submit your registration, if you do not immediately receive an email with the Directory, check to see if any spam protection on your system trapped our message, or contact the NMF Resource Center at 800-862-7326 ext. 26 and request a Directory.

If you do not want to register, you can call our Resource Center at 800-8- MARFAN (800-862-7326) ext 26.


I CANNOT GET TO ONE OF THE SPECIALTY CLINICS ON YOUR LIST. WHAT SHOULD I DO?
If you need a diagnostic evaluation and cannot obtain a consultation at any of the clinics on the NMF Clinic Directory, expertise is more likely (but not guaranteed) to be found in the departments of Medical Genetics and Cardiology at major medical centers affiliated with medical schools. Although an echocardiogram, ordered through the medical specialty of Cardiology, is an important part of an evaluation for Marfan syndrome, the medical specialty most frequently positioned to coordinate all the specialties needed for a comprehensive diagnostic evaluation is Medical Genetics.

If you already have a diagnosis, a large medical center is one place to start. Also you can interview doctors on your insurance plan to assess their Marfan syndrome/related disorders knowledge or contact one of our volunteers in your area. They can tell you who their doctors are and if they are helpful and knowledgeable.

Since Marfan syndrome is relatively rare it is not always possible to find knowledgeable doctors close to one’s home. You might consider a one-time distant consultation with a more knowledgeable doctor and bring the recommendation from the consultation to your local doctor.

Even if you travel for a consultation, you will need to establish a relationship with a local doctor. Developing a relationship takes time. Your goal is to find a doctor who is willing to talk with you, accept recommendations for care from any specialty consultations you obtain, and accept the information about Marfan syndrome you can obtain from the NMF.

CONTACT THE NMF'S INFORMATION RESOURCE CENTER
The NMF’s Information Resource Center staff can help you to find a doctor in your area. To contact the Resource Center call 1-800-8-MARFAN ext. 26 or submit a question through the email Ask a Question form.