Activating Your Activism
Emily Ladau, author and activist, is a part of the rare disease community. She lives with Larsen...
The Marfan Blog
We See Your Impact
Awareness. In the Marfan world, this is one word with infinite meanings and feelings attached....
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...
Carrying His Heart in Mine
My story about Marfan syndrome mostly takes a back seat to my husband's. He's the one with Marfan,...
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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