A Teen’s Perspective: Finding a Community at Conference
As a teen with a connective tissue condition, building relationships with others who “get” you...
Blog Category: Community
Passion and Outreach Lead to Marfan Awareness
A Marfan Awareness Month Blog Photo: In January, Christopher was presented with a...
An Ode to the Spoon Theory and Online Communities
Chronically ill and disabled individuals utilize the internet to find community and spread...
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...
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,...
An Eagle Scout’s Generosity in Memory of a Friend
Jonathan Brink, an 18-year-old who attends Branham High School in California and is a Boy Scout in...
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