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...
The Marfan Blog
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...
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...
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