Know the Signs, Fight for Victory

Blog Category: Healthcare Management

Community, Healthcare Management, Quality of Life December 12, 2023December 12, 2023

Generational Care Provides Continuity

Debra Theine has experienced Marfan syndrome’s impact as a daughter, patient, mother, and...

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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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Awareness, Diagnosis, Education, Healthcare Management December 13, 2021December 13, 2021

My Doctor Knew Me – He Knew Amy

In 1971, at the young age of two, Amy Grimshaw had a routine appointment with a doctor at the Army...

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Education, Healthcare Management, Quality of Life April 7, 2021July 27, 2021

The Case of the Tell-Tale Toes

If you have a connective tissue condition, chances are you are probably having problems with your...

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Advocacy, Awareness, Community, Healthcare Management, Quality of Life February 26, 2021July 29, 2021

A Journey of Acceptance

The broad goal of Marfan awareness is about seeing the complete person behind the diagnosis. My...

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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.