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The Isabella Noelani Parson Welch Memorial Grant for VEDS Research The Isabella Noelani Parson Welch Memorial Grant for VEDS Research supports innovative research focused specifically on Vascular Ehlers-Danlos syndrome (VEDS). This two-year grant provides up to $125,000 ($62,500 per year) to advance understanding of VEDS and accelerate discoveries that improve the diagnosis and management of […]
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.
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 […]
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 […]
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