“Alone we are rare, together we are strong!”: Rare Disease Day Advocacy 2026
Director Loeys-Dietz and Marfan for the Marfan Foundation Stacey Watson shares her...
Blog Category: Advocacy
Behavioral Health and Concurrent Chronic Illness: A Call to Action
ADVISORY: This post discusses depression, addiction, and loss. Guest blogger Rosanne...
Today is VEDS Action Day
Please note: this story discusses and depicts emergency medical experiences. Guest...
Mi Historia con el Síndrome de Marfan y la Disección Aórtica
My Story with Marfan Syndrome and Aortic Dissection La bloguera invitada Emily Herrera...
Finding Purpose After Loss: Parents’ Mission to Save Others
Kaitlyn was a vibrant, seemingly healthy 14-year-old girl who enjoyed musical theater and...
Connected and Not Alone
I was so excited to attend the Michigan Regional Symposium in early May! We moved to Michigan in...
A Trip to Conference Leads to a Marfan Diagnosis for 30+ Family Members
Last year, Reginald “Reg” Bronson and his family gathered for the funeral of his brother who...
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