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 For: Patients & Families
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.
How to Ask for Help Guides
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.
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.
Mental Health Resources
While most people with chronic conditions focus on their physical health, mental health is often ignored. Having a connective tissue condition isn’t easy, so give your mind the TLC it needs.
Request Materials
Use this form to request printed versions of our fact sheets, brochures, and booklets.
[hubspot portal=”318185″ id=”9b7d2cd8-6b21-473d-b3be-53d19db50940″ type=”form”]
Materials Request