Know. Connect. Thrive.
A coordinated clinic is the best place to go for Marfan syndrome and related disorders care. A coordinated clinic provides expertise in all Marfan-related specialties: genetics, cardiology (heart), ophthalmology (eyes), and orthopedics (bones and joints). Download our clinic directory, which is comprised of institutions around the country that treat Marfan syndrome and related conditions. We […]
For families navigating life with a genetic aortic and vascular condition, the move from pediatric to adult care can feel like a mixed milestone. The transition often marks the first time a young person is expected to take primary responsibility for their health by managing appointments, medications, and decisions that were once made by parents/caregivers […]
During Mental Health Awareness Month, we’re sharing some quick ideas for focusing on you.
A concise, evidence-based clinical guidance document from the Marfan Foundation in collaboration with Luciana Young, MD, offering families, pediatricians, and cardiologists practical information on evaluating and treating ADHD in children with genetic aortic and vascular conditions such as Marfan syndrome, Loeys-Dietz syndrome, and Vascular Ehlers-Danlos syndrome. This article is intended for educational purposes only and […]
The Foundation’s Professional Advisory Board has issued an updated 2025 statement regarding COVID-19 vaccinations for both adults and children with Marfan, Loeys-Dietz, and VEDS, and related conditions. This guidance reflects the latest research and clinical expertise to help individuals and families make informed decisions about vaccination and ongoing health protection. If you have additional medical […]
What are the most common gastrointestinal issues in people with connective tissue conditions? The answer to this question and more can be found in this document from Tony Guerrerio, MD, PhD.
When you’re recovering from surgery or having a pain flare-up, people often ask how they can help. But when you’re not feeling well, it’s hard to know what to say. These worksheets are designed for adults, teens, and kids to communicate the best ways to support them through medical events.
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