Knowledge of Marfan Syndrome Fosters Longevity, Drives Purpose
I was diagnosed with Marfan Syndrome at birth. My father had a spontaneous mutation, and he passed...
Blog Category: Education
Connected and Not Alone
I was so excited to attend the Michigan Regional Symposium in early May! We moved to Michigan in...
Activating Your Activism
Emily Ladau, author and activist, is a part of the rare disease community. She lives with Larsen...
Mental Health with Marfan Syndrome (in a Post-2020 World)
When you have a lifelong condition like Marfan syndrome, your daily experience looks different...
Dr. Shana Kusin: Perspective from an ER Doctor who is a Marfan Mom
Marfan Awareness Month is a time to raise awareness of Marfan syndrome among the public and...
Awareness is Never Losing Someone Unexpectedly to Marfan Syndrome
Helping Others Helps Me I share because I care. It sounds simple, but it is so true. There are...
My Doctor Knew Me – He Knew Amy
In 1971, at the young age of two, Amy Grimshaw had a routine appointment with a doctor at the Army...
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