As a service to families with Marfan, VEDS, Loeys-Dietz and related conditions, we have assembled a list of academic medical centers at leading institutions that have shown interest and have experience and expertise in treating people with these conditions. The Institution Directory provides detailed information about each of the sites to help you make more informed decisions about the care you receive. You are responsible for interviewing and selecting the practitioner. The institutions listed here vary greatly in size, staff training, and services offered. We are happy to discuss options with you for your specific situation, if needed. Healthcare provider information is supplied solely by the providers themselves. All information is also self-reported and unverified. The Foundation does not endorse or recommend individual healthcare providers or hospitals.
Some of the centers in the directory are tertiary care centers which means they provide highly specialized medical care. This can encompass an extended period of care that involves advanced and complex procedures and treatments performed by medical specialists in state-of-the-art facilities. The Foundation also encourages sites to provide quality overall care not only for the heart and blood vessels, but also for the multiple aspects of these conditions such as eyes, bone and joint, lung, gastrointestinal, and pain issues which can affect an individual’s quality of life.
Some sites consider themselves a connective tissue clinic, which can service many different conditions, including bone and skin conditions, skeletal dysplasias, etc. Others consider themselves aortic centers and concentrate on conditions that affect the aorta and heart. The list only includes sites that are affiliated with a university or medical hospital; private physician practices are not included.
Developing a Care Team
Every patient should aim to establish a care team. A care team should consist of day-to-day general care that is handled by a primary care physician who is knowledgeable in genetic aortic conditions, a cardiologist, or a physician who is willing to learn about your specific condition. You should speak to your physician about developing these goals. The care team should include several specialists depending on your condition and how your diagnosis affects you.
In selecting practitioners for the care team, it is important to define and explain the role of the primary care physician. They should be willing to:
- Form a partnership with you to achieve health management goals
- Form a partnership with a specialist team at a high volume center. You should visit an expert at least once so that they have your history and medical records and can be called upon in an emergency.
- Develop a care plan that includes medications, lifestyle changes, exercise modification, nutrition, and surveillance and imaging reminders
- Provide criteria and contacts in case of sudden healthcare developments and be sure that there is always designated back-up
- Provide care and management to high risk patients with a chronic and progressive condition
- Provide seamless cross coordination with specialists, especially in an emergency situation
- Be the main point of contact for the patient, family, and other healthcare providers throughout the care process
- Review healthcare management information with ongoing updates and mentoring opportunities published in the medical literature, available from independent resources, or from The Marfan Foundation
- Add an emergency alert on the electronic medical record for arterial dissection, pneumothorax, carotid cavernous sinus fistula, and colon rupture, as well as emergency imaging considerations. Instructions are provided by The Marfan Foundation here.
When choosing a primary care physician, it is important to keep in mind and emphasize with the physician that, while they may not have experience caring for someone with a genetic aortic or vascular condition, they may have managed complications like arterial dissections, aneurysms, and lung collapses in individuals in the general public. Primary care physicians must be willing to collaborate within the care team, learn the risks associated with your condition, and become familiar with managing these complications. You can also check with them to ask for their referrals to trusted colleagues.