Resources for 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.
We hope you will see us as a valuable partner as you care for patients with Marfan syndrome and related conditions.
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 providers evaluate 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.
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 doctors 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.
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.
Every year, we hold an Annual Conference which provides people living with Marfan syndrome and related conditions, and their families, an opportunity to learn about these conditions from the country’s medical experts, hear about the latest research, and connect with other people who are on the same medical journey. Physicians can benefit from attending the conference in several ways.
First, it offers the opportunity for physicians to participate in a health fair where they can observe mutliple evaluations in a single day. Secondly, it allows for networking with the most prestigious experts in the field and families faced with difficult medical journeys at numerous social events.
The health fair is conducted for people who do not have access to experts in the field for varying reasons and may be in need of a differential diagnosis or management advice. It is an opportunity to consult on evaluations with geneticists, cardiologists, surgeons, orthopedists and numerous other specialties as needed. The health fair ends with a clinical review of challenging health fair cases or challenging cases from other clinical sites. This provides first-hand experience with a multitude of people with these conditions. It is an excellent training experience for young physicians.
Our Annual Conference is held every summer at varying locations. Our next Annual Conference, in the summer of 2021, will be virtual due to the current public health crisis. In 2022, the Annual Conference will be in Newport Beach, CA, It will be hosted by Hoag Hospital, July 7-10, 2022.
Special Resource for Doctors
Dr. Reed Pyeritz and Ms. Jane Tumpson Marfan Conference Physician Travel Scholarship. Learn more and apply here.
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 firstname.lastname@example.org.