Blog Category: Education

Advocacy, Awareness, Community, Education June 1, 2023June 1, 2023

Connected and Not Alone

I was so excited to attend the Michigan Regional Symposium in early May! We moved to Michigan in...

Advocacy, Education April 11, 2022April 11, 2022

Activating Your Activism

Emily Ladau, author and activist, is a part of the rare disease community. She lives with Larsen...

Awareness, Community, Education, Healthcare Management, Mental Health February 14, 2022February 11, 2022

Mental Health with Marfan Syndrome (in a Post-2020 World)

When you have a lifelong condition like Marfan syndrome, your daily experience looks different...

Awareness, Education, Healthcare Management February 7, 2022February 7, 2022

Dr. Shana Kusin: Perspective from an ER Doctor who is a Marfan Mom

Marfan Awareness Month is a time to raise awareness of Marfan syndrome among the public and...

Advocacy, Awareness, Education, Know the Signs, Volunteer February 1, 2022January 31, 2022

Awareness is Never Losing Someone Unexpectedly to Marfan Syndrome

Helping Others Helps Me I share because I care. It sounds simple, but it is so true. There are...

Awareness, Diagnosis, Education, Healthcare Management December 13, 2021December 13, 2021

My Doctor Knew Me – He Knew Amy

In 1971, at the young age of two, Amy Grimshaw had a routine appointment with a doctor at the Army...

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

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...

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Blog Category: Education

Connected and Not Alone

Activating Your Activism

Mental Health with Marfan Syndrome (in a Post-2020 World)

Dr. Shana Kusin: Perspective from an ER Doctor who is a Marfan Mom

Awareness is Never Losing Someone Unexpectedly to Marfan Syndrome

My Doctor Knew Me – He Knew Amy

Working from Home and Your Mental Health: The Positives

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Together, We are Fighting for Victory

Know the signs. Fight for victory.

Together, We are Fighting for Victory

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Have a question? We can help.

Together, We are Fighting for Victory

Know the signs. Fight for victory.

Together, We are Fighting for Victory