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About

Neonatal Marfan syndrome (also called early-onset or infantile Marfan syndrome) presents unique challenges for families and medical professionals alike. We are a dedicated group of parents committed to providing the support and resources needed to navigate this rare condition.

 

Whether you're a parent seeking information and connection or a doctor looking for the latest research and best practices, we're here to help. Our mission is to improve the quality of life for all those affected by neonatal Marfan syndrome.

 

This work is dedicated in memory of Michael and all those who have gone before. 

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Get Involved:
Research Participants Wanted 

We are dedicated to providing support and resources for doctors and parents. Our mission is to improve the lives of those affected by neonatal Marfan syndrome (also called early-onset or infantile Marfan syndrome).

 

If your child is affected by neonatal Marfan, please consider joining the following research studies.  With your help, we can make a real impact and create a brighter future for these individuals.

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Upcoming Study:
First Comprehensive Survey
of Neonatal Marfan Syndrome

Laboratory
CLARITY
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Research participants wanted for The Collaborative For Longitudinal Aortic Imaging In The Young (CLARITY):


Are you interested in helping researchers develop the world’s largest database for children and young adults with genetic aortic disease? Researchers at Texas Children’s Hospital are interested in learning more about young people with aortic disease that has a genetic basis. They are asking for your help because there are currently no medical guidelines on how to best manage aortic dilation in children, and little is known about the long-term outcomes of these genetic conditions. In an effort to learn more, researchers will collect clinical information from your medical records to better understand how the aorta changes over time, and how your genotype (your unique genetic code) affects your disease. This information will help create guidelines that will provide better tools for doctors to diagnose, estimate risks, and treat children and young adults with genetic aortic disease. These guidelines aim to improve the care and quality of life for individuals diagnosed with these conditions.

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© 2025 Neonatal Marfan. Privacy policy here.  

Medical disclaimer:  The information provided on this resource page is for educational purposes only and should not be considered medical advice. It is intended to offer general information about neonatal Marfan syndrome and related topics for parents, families, and healthcare professionals. This information is not a substitute for professional medical evaluation, diagnosis, or treatment. Read full medical disclaimer here.

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