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Professional Resources

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 disorders 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 disorders. 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 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 disorders. 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 center. These include Marfan A to Z, Marfan Does Not Mean Martian (also available via download), and Marfan Syndrome: A Guide for Teens.