The Marfan Blog

Why the “V” Matters to Me: Living with VEDS – Vascular Ehlers-Danlos syndrome

"Our experiences matter, our futures matter, and our lives matter..." VEDS Movement...

Advocacy, Awareness, Quality of Life October 23, 2026October 23, 2026

Awareness, Community October 22, 2026October 22, 2026

National Estate Planning Awareness Week: October 19 – 25, 2026

A Gift of Gratitude “I learned so much from the Marfan Foundation. What if it never...

Advocacy, Awareness, Quality of Life September 30, 2026October 2, 2026

Diagnosed with Stickler Syndrome 18 Years Ago, Marie Law, 63, says: “You Can Live a Full Life.”

Marie Law with her son, David. He is the only one of her five children who has Stickler...

Community, Quality of Life September 30, 2026September 30, 2026

Camp Victory 2026: Where Summer Fun Builds Lasting Connections

There are subtle changes at Camp Victory for Kids’ two five-night summer camp sessions each...

September 19, 2026September 19, 2026

After Her Husband’s Aortic Dissection: Heidi’s Story

In the aftermath of her husband Chris’s aortic dissection, Heidi Underwood had no plans...

Awareness, Community September 9, 2026September 10, 2026

Putting Loeys-Dietz on the Page

Patrick Stapleton’s debut novel honors his sister while raising awareness of the connective...

Advocacy, Community, Healthcare Management, Quality of Life September 2, 2026September 2, 2026

Meet Stephanie: Nurse, Mom, and Help & Resource Center Advocate

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