Know the Signs, Fight for Victory

Confidentiality Policies


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.