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 […]
Resource Library
Explore hundreds of free resources to help you on your journey.
A Month of Gratitude & Self-Care 2026
During Mental Health Awareness Month, we’re sharing some quick ideas for focusing on you.
Coping With Grief & Loss
Coping with Grief & Loss – Losing Someone with a Genetic Aortic and Vascular Condition If you’ve lost a loved one to a genetic aortic and vascular condition, know that we are so very sorry for your loss. Whether it’s a child, young adult, older adult, or a family member, friend, or someone you know […]
Stimulant Use in Children with Genetic Aortic and Vascular Conditions
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 […]
COVID-19 Vaccine Statements
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 […]
GI Issues Q&A
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.
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