Top Recommendations
As a community of parents of children with neonatal Marfan syndrome, we created this resource as a beacon of shared knowledge. It provides the insights and recommendations we've gathered and includes:
-
Gear Recommendations: Products that truly make a difference.
-
Neonatal Marfan Life Hacks: Clever solutions for daily challenges.
-
What We Wish We Would Have Known: Hard-earned wisdom to guide you.
​
Because together, we are stronger in navigating neonatal Marfan.​​
​
++Top Recommendations++​​
​​
​This document is a work in progress and will be updated frequently as new information becomes available. We've decided to share it now to provide immediate help to parents, even though some sections are still incomplete. Please check back often for updates.
This guide is also a collaborative effort. We encourage you to share your own insights and discoveries that could benefit other families. If you have valuable information to contribute, please email us at neonatalmarfan@gmail.com or share it in our Facebook group.
​​​
​
*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. Any information presented reflects the personal experience and opinions of the parent sharing it, and is not a substitute for professional medical evaluation, diagnosis, or treatment. Always consult with a qualified healthcare professional for any medical concerns or before making any decisions related to your health or the health of your child. Read full medical disclaimer here.​
Connect with our Community
Neonatal Marfan Parent Facebook Group
You're Not Alone ​​​
​
This is a support group for parents/guardians who have a child with neonatal/infantile/severe early-onset Marfan syndrome.
​
The purpose of this group is to have a space for parents/guardians where they can chat among peers who understand and experience the same struggles with their children. An invaluable resource for parents! We're here for you!
(Note: To join the group, you will be asked to answer a few questions to verify your child's condition. This is not a group for medical professionals or researchers.)
Marfan Foundation
Neonatal Marfan Support Group
Are you a parent or guardian of a child with neonatal/infantile/severe early-onset Marfan syndrome? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with these conditions. This diagnosis is generally reached by the child having severe symptoms of Marfan syndrome at birth or shortly thereafter.
This group meets on the second Tuesday of every month at 8 pm EST.
​
​