Blog Category: Community

Community, Family Planning July 26, 2017February 24, 2021

Beautiful Gift

Hi my name is Allison. I was diagnosed with Marfan syndrome when I was 15 years old after my older...

Community, Quality of Life June 2, 2017February 24, 2021

Why I’m Grateful for Marfan Syndrome

I was recently reading a book called How to Live a Good Life by Jonathan Fields (which I highly...

Community, Diagnosis, Quality of Life, Research January 10, 2017February 24, 2021

Meet Your Gene: An Introduction to the Marfan Gene and Current Research

Roanne Weisman, a healthcare writer from Boston who has Marfan syndrome and long-time member of...

Community, Quality of Life November 1, 2016February 24, 2021

When it Feels Like Marfan is Winning

About six months ago, I made the decision to “retire” from my career as a full time nanny at...

Community, Diagnosis, Know the Signs, Quality of Life September 8, 2016February 24, 2021

Sinclaire’s Story from the Heart

Most people affected by Marfan syndrome experience a life-changing moment when they or a loved one...

Community, Know the Signs, Quality of Life July 20, 2016February 24, 2021

Linh Ngo: My Marfan Story

Part 1 of Linh Ngo’s Marfan story is reprinted here with permission from the author. You can...

Community, Quality of Life May 13, 2016February 24, 2021

When People Don’t Get It

As an individual with Marfan syndrome, you've most likely had that awkward encounter with a...

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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