The Marfan Foundation is the primary source for up-to-date and trustworthy information for individuals and families affected by Marfan, Loeys-Dietz, VEDS, and related conditions. We offer easy-to-understand materials to help you on your medical journey. In addition, we provide an array of opportunities for support for those living with the condition and their family members.
Support for Individuals and Families
Learning anything new is often challenging, and this is especially true when you are trying to learn about a complex medical condition. The words and concepts may be unfamiliar. Some of the details can be troubling. You may feel alone. It can be difficult to know what to do with all the information you gather and even harder to find someone who can relate.
We’re here to help. We offer a wealth of information for you and your loved ones about Marfan syndrome and related conditions, as well as special resources for children and teens. Our warm and welcoming community is here for you. Our goal is to help you learn what you need to know quickly and support you and your family on your medical journey.
Our mentor program gives individuals of any age an opportunity to connect with another person who has faced the same situation they have on their journey with Marfan syndrome or a related condition – whether they are affected directly or a family member of an affected person. It gives people in our community an opportunity to ask questions and network with other people, regardless of their location. It is a great opportunity for people learn and get support from others in the community.
Alphabetized, easy-to-understand definitions for common words and terms related to Marfan syndrome and related genetic aortic conditions.
If you or someone you love has Marfan syndrome or a related conditions, we offer hundreds of free easy-to-understand materials to help you on your medical journey.
Connective Issues provides medical news, breakthrough research, stories about outstanding volunteers and community members, and Foundation happenings. It is published three times a year in print and online.
Stories of Hope on the Marfan Blog
The Marfan Foundation is the primary source for up-to-date and trustworthy information for patients and family members, as well as healthcare providers and researchers.