The Marfan Blog

Mental Health: Sharing Leads to Support and Hope

What are the mental health issues that people with Marfan syndrome and related connective tissue...

Awareness, Mental Health February 13, 2023February 13, 2023

Awareness February 6, 2023February 2, 2023

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...

Awareness January 31, 2023January 31, 2023

Pamela Cummings: Advocacy Though Online Action

A Marfan Awareness Month Blog Q&A There are many ways to spread Marfan awareness and...

Advocacy, Awareness, Community December 8, 2022December 8, 2022

An Ode to the Spoon Theory and Online Communities

Chronically ill and disabled individuals utilize the internet to find community and spread...

Advocacy, Education April 11, 2022April 11, 2022

Activating Your Activism

Emily Ladau, author and activist, is a part of the rare disease community. She lives with Larsen...

Awareness, Community February 21, 2022February 22, 2022

We See Your Impact

Awareness. In the Marfan world, this is one word with infinite meanings and feelings attached....

Awareness, Community, Education, Healthcare Management, Mental Health February 14, 2022February 11, 2022

Mental Health with Marfan Syndrome (in a Post-2020 World)

When you have a lifelong condition like Marfan syndrome, your daily experience looks different...

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Together, We Can Know the Signs and Fight for Victory

Know the signs. Fight for victory.

Together, We Can Know the Signs
and Fight for Victory