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.
To find a Medical Geneticist in your home area you can visit the American College of Medical Genetics website (the association for which most Medical Geneticists belong to). The American College of Medical Genetics website has a Genetics Clinics Database that individuals can use to find Medical Geneticists in their home area. To access the Genetics Clinics Database visit http://www.acmg.net/GIS/Default.aspx . Click "Find Genetics Services, " agree to the disclaimer. You can search the database by city, state and zip code. You can also search the database by genetics services offered. In looking for a genetics clinic that can best serve people who have been diagnosed with Marfan syndrome or a related disorder or who suspect they may have a connective tissue disorder such as Marfan syndrome the best genetics services to search for include connective tissue, bone/skeletal disorders, cardiovascular/connective tissue and adult congential heart disease, adult medical genetics, pediatric genetics, and genetics counseling. You may need to search for all of these diffeent genetics services to find an appropriate Medical Geneticist in your home area.
If you already have a diagnosis, a large medical center is also a 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.
DISCLAIMER
The National Marfan Foundation (NMF) is a health advocacy organization. The NMF does not provide medical advice or treatment. We are not a health care provider. It is important to realize that information provided by the NMF is not meant as a replacement for proper care from a doctor, therapist, etc. Information provided by the NMF is not a substitute for medical treatment or psychological care. It is vital that you talk with your health care providers regarding the diagnosis and treatment of Marfan syndrome and related disorders and your symptoms/features. Minors should consult with a parent/legal guardian when considering treatment and providers.
Health care provider information is supplied solely by the providers themselves and is not checked or warranted by the National Marfan Foundation. The NMF provides contact information for health care providers who are known to have seen patients with Marfan syndrome and related disorders. The NMF does not endorse or recommend individual health care providers. You are responsible for interviewing and selecting the practitioner. By requesting health care provider resources you understand and agree that the NMF and it’s affiliates are not responsible for any providers’ services or lack thereof.
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