“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...
The Marfan Blog
A mom’s perspective on life in the Philippines with early-onset Marfan syndrome
Penelope shared her first-person story for Marfan Awareness Month. Hi! My name is...
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...
Have a question? We can help.
Contact our Help & Resource Center by
submitting a question via the link below.
