Frequently Asked Questions
If you have a medical question, please submit it to our Help & Resource Center.
What should you do if you think you might have Marfan syndrome or a related condition?
Marfan syndrome is a serious, potentially life-threatening condition, and an early, accurate diagnosis is essential, not only for people with Marfan syndrome, but also for those with related conditions. If you suspect that you or a loved one has Marfan, find a doctor who is knowledgeable about the condition and seek an evaluation for a diagnosis, which can include an examination of several body systems, family medical history, and genetic testing.
How can I find doctors who are experts in Marfan syndrome and related conditions?
A coordinated clinic is the best place to go for Marfan syndrome and related conditions care. A coordinated clinic provides expertise in all Marfan-related specialties: genetics, cardiology (heart), ophthalmology (eyes), and orthopedics (bones and joints).
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 I connect with others who have the same diagnosis?
The Marfan Foundation offers several ways for you to connect with community, ranging from large events to one-on-one connections. Our Walks for Victory, held around the country, can provide you with a warm and welcoming community. Additionally, we offer several virtual support groups as well as a mentor program.