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.
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.
