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Related Resources
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 […]
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 […]
A Guide to Marfan Syndrome and Related Disorders
This book was created to help readers understand the basics of Marfan syndrome diagnosis and treatment, as well to provide guidance on the lifestyle and practical issues commonly encountered by people with Marfan syndrome or a related disorder. Perhaps you have recently been diagnosed with Marfan syndrome—what should you expect? Or your child’s pediatrician has […]
Tags: Marfan Syndrome , Patients & Families
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