“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: Awareness
After Years of Medical Mysteries, Genetic Test Turns Up Marfan Syndrome – and a Life-Changing Surprise
Summer McKesson's compelling story recently put Marfan in the news with multiple national...
Camp Victory: Making Friends for Life
“My son thoroughly enjoyed his first time at camp,” said Vicci from the UK whose 11-year-old...
Stickler Syndrome: A New Chapter of Connection, Support, and Resources
Before Lissa Elkins and her husband welcomed twins in 2019, their life was busy but...
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...
“I still have so much to live for”: healing after Marfan-related aortic surgeries
Guest Blogger Rosa Adriana Felix is an aortic surgery survivor. She shares her story in her own...
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