The Marfan Blog

#VictoryToday

On December 3, the entire world will be participating in Giving Tuesday. Many people with Marfan...

Awareness, Community, Education, Quality of Life December 2, 2019February 24, 2021

Education, Healthcare Management August 24, 2019February 24, 2021

Working with Your School Nurse

For parents of a child with a connective tissue condition, worrying is a daily habit. The...

Community, Conference March 11, 2019February 24, 2021

Finding Commonality at the Marfan Annual Conference

The diagnosis of a potentially life-threatening genetic disorder like Marfan syndrome, Loeys...

Awareness, Diagnosis, Quality of Life February 20, 2019February 24, 2021

Awareness Feels Good

I’ve been reflecting recently. My son, Julian, just turned 8. That makes him the same age that I...

Awareness, Diagnosis, Know the Signs February 15, 2019February 24, 2021

Finding Marfan: A Breakthrough in Mental Health

This past year I turned the big 4-0. Forty years…my gosh, it goes by fast. But if you think...

Awareness, Quality of Life, Research February 11, 2019February 24, 2021

Adolescent, Angry & Aware: Learning to make sense of ourselves and our bodies

Have you ever found yourself in a group of new friends and pushed yourself a little (or a lot)...

Together, We Can Know the Signs
and Fight for Victory

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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