Resources for Healthcare Professionals
We know how busy healthcare professionals are as they care for the many needs of their patients. That’s why we’re here to complement the high quality care you provide. We offer tools and in-depth information on Marfan syndrome and related conditions that you can share with your patients to help them better understand and navigate their care.
We hope you’ll see the Marfan Foundation as a valuable partner in caring for people with Marfan syndrome and related conditions.
Diagnostic Tools
The diagnostic evaluation for Marfan syndrome is unavoidably complex due to the highly variable presentation of affected individuals, the age-dependent nature of many of its manifestations, the absence of gold standards, and its extensive differential diagnosis. This is sometimes challenging for doctors who don’t have extensive experience with Marfan syndrome or related conditions.
We created tools based on the most up-to-date diagnostic criteria to assist healthcare professionals in evaluating a patient who has features indicative of Marfan syndrome or related conditions. Please review and download our Marfan syndrome diagnosis checklist and visit MarfanDX.org to learn how these tools can help you care for your patients.
Management Overview
Many of the features of Marfan syndrome are common in the general population; however, treatment is sometimes more complex and aggressive because of the underlying connective tissue condition. In addition, there are important considerations because the condition affects multiple body systems.
To better equip healthcare professionals who do not have extensive experience with Marfan syndrome and related conditions, the medical advisors on our Professional Advisory Board developed resources to guide you in the management of patients. Please download them to learn more.
Resources for You
The diagnosis of Marfan syndrome is often complex. Our diagnostic tool, Marfan DX, offers the latest Z-score calculators for adults and children, nomograms, and a systemic score calculator. We also offer a checklist to help you in the diagnosis process and a referral letter, for patients you are referring to other specialists for an evaluation or testing.
If your patients require comprehensive and specialized Marfan syndrome care, please refer to our clinic directory for a clinic near you.
If you are interested in starting a Marfan syndrome and related conditions clinic, please review our suggested clinic criteria and contact us.
Resources for Your Patients
We offer a wealth of information to help you enhance your care of patients with Marfan syndrome and related conditions. Our patient education materials provide the latest medical information on these conditions in easy-to-understand language. All of our medical materials are reviewed by our Professional Advisory Board comprised of medical experts on Marfan syndrome. You can download individual copies or contact us to request a larger quantity at no charge.
In addition to our patient education fact sheets, we offer a tool to help your patients compile their family health history and an emergency preparedness kit to help them compile information they need should an emergency situation arise. We can also provide support to your patients who are seeking health insurance and disability coverage.
In addition, we offer specialized materials to support your young patients with Marfan syndrome and related conditions. These include materials to help their parents work with their schools. We have other resources for children and teens with Marfan syndrome that can be requested from our Help & Resource Center.
And, we have Mental Health resources to address common mental health concerns your patients may be experiencing.
Conference
Every year, The Marfan Foundation hosts its Conference, bringing together people living with Marfan syndrome and related conditions, their families, and healthcare professionals. The Conference provides an opportunity to learn from leading medical experts, hear about the latest research and clinical advances, and connect with others who share an interest in these conditions and the experiences of the community.
The Conference alternates between an in-person and virtual format each year. Both formats offer valuable educational opportunities for healthcare professionals, while the in-person Conference provides additional opportunities for clinical learning, collaboration, and networking.
When the Conference is held in person, healthcare professionals can participate in a health fair that provides a unique opportunity to observe and learn from multiple clinical evaluations in a single day. The health fair brings together experts from a range of specialties, including genetics, cardiology, surgery, orthopedics, and others, to provide consultations for people who may have limited access to specialists with expertise in these conditions.
The health fair also offers valuable exposure to the range and complexity of Marfan syndrome and related conditions. Healthcare professionals can observe multidisciplinary evaluations, learn about diagnostic considerations and management approaches, and gain insight into the diverse ways these conditions can affect individuals and families.
The day concludes with a clinical review of challenging cases identified through the health fair and, when appropriate, cases submitted by other clinical sites. This provides an opportunity for clinicians to learn directly from experienced specialists while considering complex cases from multiple perspectives.
For healthcare professionals early in their careers, the health fair and clinical case reviews can be an especially valuable learning experience, providing firsthand exposure to a broad range of presentations and multidisciplinary approaches to care.
The in-person Conference also creates opportunities for healthcare professionals to build relationships with leading experts in the field, connect with colleagues, and engage with individuals and families navigating complex medical experiences. Together, these opportunities support knowledge-sharing, collaboration, and a deeper understanding of the needs of people living with Marfan syndrome and related conditions.
Special Resource for Doctors
Dr. Reed Pyeritz and Ms. Jane Tumpson Marfan Conference Physician Travel Scholarship. Learn more and apply here.
Have a question?
We can help.
Contact our Help & Resource Center by submitting a question via the link below.
Institution Directory Information
To be listed on our institution directory, each institution MUST download, complete, and upload the pdf enabled application along with the medical director’s CV as outlined below. A one-hour discussion with the Foundation will also be required after completed applications are received.
The Marfan Foundation believes that many academic medical centers can provide exceptional diagnostic, management, and surgical services. Years of experience in the field, as well as the number of patients managed and the number of surgeries performed, can give a patient a sense of the level of expertise of a facility.
We have established a new procedure for listings in our institution directory. Institutions listed on our directory are required to review and update information on a yearly basis. Beginning in 2021, we will provide our community with all clinic information and data based on information received through the application. The new application requires more information than our previous survey and will take some time to fill out and gather information. Additionally, new surgical statistics are requested and will be provided to our community.
For guidance on the required criteria and completing the new application, please download the document below. If you have any questions, please contact lmay@marfan.org.
