Know the Signs, Fight for Victory

Resources

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.

If you are a doctor or other healthcare provider, we have resources for your office, diagnostic tools, and management overviews

Most Popular Resources

  • Step 1 Find a Doctor

    Find a Doctor

    A coordinated clinic is the best place to go for the diagnosis and management of Marfan syndrome and related conditions. 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.

    Find a Doctor

  • Step 2 Access our Institution Directory

    Access our institution directory*, which is comprised of Marfan syndrome and related condition clinics around the United States.

    Download Our Clinic Directory

    Disclaimer

    *The Marfan Foundation (the “ Foundation”) is a health advocacy organization. The Foundation does not provide medical advice or treatment. We are not a healthcare 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 healthcare providers regarding the diagnosis and treatment of Marfan syndrome and related conditions and your symptoms/features. Minors should consult with a parent/legal guardian when considering treatment and providers.

    Healthcare provider information is supplied solely by the providers themselves and is not checked or warranted by The Marfan Foundation. The Foundation provides contact information for healthcare providers who are known to have seen patients with Marfan syndrome and related conditions. The Foundation does not endorse or recommend individual healthcare providers. You are responsible for interviewing and selecting your practitioners. By requesting healthcare provider resources, you understand and agree that the Foundation and its affiliates are not responsible for any providers’ services or lack thereof.

  • Step 3 Contact our Help & Resource Center

    Reach out for information and support

    Ask our Help & Resource Center about hospitals and doctors with expertise in your area.

    Ask a Question

     

    Confidentiality

    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.

  • Step 4 Other Resources

    Other Resources

    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 congenital 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.

    Learn More

Find a Doctor

A coordinated clinic is the best place to go for the diagnosis and management of Marfan syndrome and related conditions. 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.

Find a Doctor

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.

  • Patient Resources

    Learn More
  • Virtual Support Groups

    Join a Group
  • School Concerns

    Learn More
  • Healthcare Insurance and Disability

    Learn More
  • Sydney Lerman Pediatric Hospitality Program

    Learn More
  • International Resources

    Learn More

COVID Resources

Friendly Connections

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.

Glossary

Alphabetized, easy-to-understand definitions for common words and terms related to Marfan syndrome and related genetic aortic conditions.

Resource Library

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

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.

Healthcare Professionals

We realize how busy healthcare providers are taking care of the various needs of their patients. That’s why we are available to complement the high quality care you provide. We have tools for you and in-depth information on Marfan syndrome and related conditions that you can make available to your patients.