Where can I find a doctor who knows about Marfan syndrome and related disorders?
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.
How can The Marfan Foundation help me find a doctor?
- Contact our help center at 800-8-MARFAN (800-862-7326) ext. 126 or on our Ask a Question page.
- Download our institution directory*, which is comprised of Marfan syndrome and related condition clinics around the United States.
- Attend the Foundation’s annual family conference which provides free patient health assessments by the nation’s experts for diagnosis and specific Marfan syndrome and related condition issues.
What other resources are available?
- The American College of Medical Genetics has a medical genetics database you can use to find a knowledgeable geneticist in your area. Helpful search terms include: connective tissue, bone/skeletal disorders, cardiovascular/connective tissue, adult congential heart disease, adult medical genetics, pediatric genetics, and genetics counseling.
- The cardiology or genetics department of a university medical center or teaching hospital may also be able to provide expertise.
The Marfan Foundation (the “ Foundation”) is a health advocacy organization. The Foundation does not provide medical advice or treatment. We are not a health care provider. It is important to realize that information provided by the Foundation is not meant as a replacement for proper care from a doctor, therapist, etc. Information provided by the Foundation 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 Marfan Foundation. The Foundaiton provides contact information for health care providers who are known to have seen patients with Marfan syndrome and related disorders. The Foiundation 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 Foundation and its affiliates are not responsible for any providers’ services or lack thereof.
Except with your express consent or as permitted or required by law (or as otherwise stated in the website Privacy Statement), all information you provide is strictly confidential and never shared outside our organization. Not knowing who you are, where you live and the reason for your inquiry may limit, or even prevent, our ability to respond to your questions and concerns.