The Marfan Blog

Working from Home and Your Mental Health: The Positives

In 2020, the world saw that there are many benefits to working from home, especially for...

Education, Quality of Life May 25, 2021July 27, 2021

Awareness, Diagnosis, Quality of Life May 3, 2021July 27, 2021

Losing My Sight Saved My Life

Jasmine’s family (l-r) Mom Joanne Duffey, dad Alvin Duffey, Jasmine, sister Jawanda Duffey, and...

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...

Advocacy, Awareness, Community, Volunteer March 16, 2021January 31, 2024

Volunteer Drives Successful First-Year Proclamation Project

Amy Kipnis, the volunteer leader of our Legislative Action Team, has been a long-time volunteer at...

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...

Awareness, Community, Family Planning, Quality of Life February 23, 2021February 24, 2021

Marfan Moms: The Ultimate Support Group

When my daughter, Gabriella, was diagnosed with Marfan syndrome at the age of five our family was...

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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