This book was created to help readers understand the basics of Marfan syndrome diagnosis and treatment, as well to provide guidance on the lifestyle and practical issues commonly encountered by people with Marfan syndrome or a related disorder. Perhaps you have recently been diagnosed with Marfan syndrome—what should you expect? Or your child’s pediatrician has suggested he or she be evaluated for Marfan syndrome—what does that entail? Or maybe your new spouse has Marfan syndrome and you want to have children—what are the risks and can you do anything to minimize them? This book aims to address these and many other questions.
Related Resources
Emergency Alert Card
Download a PDF of our Emergency Alert Card which you can carry in your wallet.
Decoding Genetic Insights: Navigating Possible Test Results
Understanding your genetic test results for conditions like Marfan, Loeys-Dietz, or VEDS can be challenging. Here’s a simple Q&A to help make sense of what your results may mean and what you might consider doing next.
Tags: Caregivers, Patients & Families
Die Lunge Beim Marfan-Syndrom
Viele Patienten mit Marfan-Syndrom und einigen verwandten Erkrankungen haben Probleme mit ihrer Lunge. Wenn Sie das Marfan-Syndrom haben, ist es wichtig, dass Sie einen Pneumologen (einen Spezialisten für Lungenkrankheiten) aufsuchen, wenn Sie den Verdacht haben, dass Sie Probleme mit Ihrer Lunge haben.
Tags: Marfan Syndrome , Patients & Families
Know the signs.
Fight for victory.
Join us in the fight for victory over Marfan syndrome and related conditions and help us create a brighter future for everyone living with these conditions.