The Marfan Blog

Jewelry Designer Living with Marfan Creates Necklace to Commemorate Awareness Month

A Los-Angeles-based jewelry designer and member of the Marfan community has created a specially...

February 14, 2024February 14, 2024

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...

Awareness, Community, Quality of Life, Surgery December 19, 2023December 20, 2023

Sweet Relief

Guest writer Mazzy Sass is a junior at Schreiber High School in Port Washington, NY (also the...

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...

Awareness, Community, Know the Signs November 28, 2023November 28, 2023

The Cruz Family

Now that I see things more clearly about my son’s condition, I can tell you our story. My...

Awareness, Community November 28, 2023

Miracles Run In My Family

My father, my brother, and I each had aortic root and valve replacements at 26 years old. Anyone...

Awareness, Community, Know the Signs November 28, 2023

Let’s Just Get Checked Out

I'd actually heard about Marfan Syndrome before my dissection. It was mentioned on a TV program...

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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