Site of the Day: Barth Syndrome Foundation
What It Is: "The Barth Syndrome Foundation is an engaged, global community whose mission is saving lives through education, advances in treatment, and finding a cure for Barth syndrome. Our vision is a world in which Barth syndrome will no longer cause suffering or loss of life."
Who's In Charge: The foundation is "the only world-wide volunteer organization dedicated to saving lives through education, advances in treatment and pursuit of a cure for Barth syndrome."
Why It's Worth Checking Out: The site is an information source for families, but also for doctors and researchers who may have trouble diagnosing this rare disease or finding funds to treat it.
Where to Start: The "First Time Visitor?" page gives an overview and a TOC.
+ Page of the Day: 10 Questions to Ask the Doctor +
No comments yet. Leave a Comment