Blog Category: Community

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...

Community, Conference, Quality of Life May 3, 2023May 4, 2023

A Teen’s Perspective: Finding a Community at Conference

As a teen with a connective tissue condition, building relationships with others who “get” you...

Advocacy, Awareness, Community February 21, 2023February 17, 2023

Passion and Outreach Lead to Marfan Awareness

A Marfan Awareness Month Blog Photo: In January, Christopher was presented with a...

Advocacy, Awareness, Community December 8, 2022December 8, 2022

An Ode to the Spoon Theory and Online Communities

Chronically ill and disabled individuals utilize the internet to find community and spread...

Awareness, Community February 21, 2022February 22, 2022

We See Your Impact

Awareness. In the Marfan world, this is one word with infinite meanings and feelings attached....

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, Community, Quality of Life January 13, 2022January 13, 2022

Carrying His Heart in Mine

My story about Marfan syndrome mostly takes a back seat to my husband's. He's the one with Marfan,...

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View Our science and treatment arm

Blog Category: Community

Connected and Not Alone

A Teen’s Perspective: Finding a Community at Conference

Passion and Outreach Lead to Marfan Awareness

An Ode to the Spoon Theory and Online Communities

We See Your Impact

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

Carrying His Heart in Mine

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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