Related Resources
Career Development Award
The Career Development Award will support two-year $100,000 grants ($50,000 per year) in basic, translational, or clinical research studying any discipline involved in Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos syndrome, and other related conditions. This grant program is designed to support investigators early in their career to derive preliminary data in a key concept area […]
Tags: All , Healthcare Professionals, Researchers
Shprintzen-Goldberg Syndrome Fact Sheet
Shprintzen-Goldberg Syndrome is a condition that affects many parts of the body. People who have this syndrome have a combination of unique facial features and skeletal and neurological abnormalities. Shprintzen-Goldberg syndrome is caused by genetic changes (mutations) in a gene that contributes to the formation of connective tissue. How prevalent is Shprintzen-Goldberg syndrome? What are […]
Parent Toolkit
This Parent Toolkit is a resource for parents of children with Marfan, Loeys-Dietz, VEDS, or another genetic aortic condition. It offers resources to help you deal with your child’s school, doctors, and healthcare, and guide you to additional resources for information and support.
Tags: Loeys-Dietz Syndrome, Marfan Syndrome, VEDS , Caregivers
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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.