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 firstname.lastname@example.org
- 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.