Know the Signs, Fight for Victory

Blog Category: Education

Awareness, Diagnosis, Education February 9, 2024July 31, 2024

Knowledge of Marfan Syndrome Fosters Longevity, Drives Purpose

I was diagnosed with Marfan Syndrome at birth. My father had a spontaneous mutation, and he passed...

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Advocacy, Awareness, Community, Education, Mental Health June 1, 2023June 14, 2023

Connected and Not Alone

I was so excited to attend the Michigan Regional Symposium in early May! We moved to Michigan in...

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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...

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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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Awareness, Education, Healthcare Management February 7, 2022February 7, 2022

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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Advocacy, Awareness, Education, Know the Signs, Volunteer February 1, 2022January 31, 2022

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...

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Together, We Can Know the Signs
and Fight for Victory

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Know the signs. Fight for victory.

Join us in the fight for victory over Marfan syndrome, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. Help us create a world in which everyone with these conditions can live their best life.