A Trip to Conference Leads to a Marfan Diagnosis for 30+ Family Members
Last year, Reginald “Reg” Bronson and his family gathered for the funeral of his brother who...
The Marfan Blog
Passion and Outreach Lead to Marfan Awareness
A Marfan Awareness Month Blog Photo: In January, Christopher was presented with a...
Mental Health: Sharing Leads to Support and Hope
What are the mental health issues that people with Marfan syndrome and related connective tissue...
Dr. Douglas Richter: Insights from a Medical Expert with Marfan Syndrome
A Marfan Awareness Month Blog Marfan Awareness Month is a time to raise awareness of Marfan...
Pamela Cummings: Advocacy Though Online Action
A Marfan Awareness Month Blog Q&A There are many ways to spread Marfan awareness and...
An Ode to the Spoon Theory and Online Communities
Chronically ill and disabled individuals utilize the internet to find community and spread...
Activating Your Activism
Emily Ladau, author and activist, is a part of the rare disease community. She lives with Larsen...
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