The Marfan Blog

Suely Johns – My Marfan Story

When I shared that my victory over Marfan and related disorders was "Finding a MarFriend and a...

Community, Family Planning May 28, 2014February 25, 2021

Advocacy, Awareness, Know the Signs May 22, 2014February 25, 2021

Ben Carpenter – My Marfan Story

Before I share my story, I want to clarify that the title of my book, “The Bigs,” has nothing...

Conference May 15, 2014February 25, 2021

WORK IT!

I first got involved with The Marfan Foundation the summer before my freshman year of high school....

Community, Family Planning, Volunteer May 2, 2014February 25, 2021

Nicole Kramer – My Marfan Story

Twelve years ago I married my husband Mike. Up until I met him, I had never heard of Marfan...

Quality of Life April 28, 2014February 25, 2021

Embracing A Road Not Chosen Through Painting

Embracing a road not chosen is a choice that is put in front of all of us when facing an illness...

Conference, Family Planning April 16, 2014February 25, 2021

Aortic Dissection, My Family, and the Annual Marfan Conference

I don’t have the greatest memory, so I am not sure when I attended my first conference. I do...

Know the Signs March 27, 2014February 25, 2021

Weight Gain and Marfan Syndrome – Why Can’t I Put On Weight?

Many people with Marfan syndrome have difficulty gaining weight, especially when they are...

Together, We Can Know the Signs
and Fight for Victory

View all Divisions

View Our science and treatment arm

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.

Donate Now

Stay Connected on Social Media

Have a question? We can help.

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