Organization Overview

https://www.barthsyndrome.org/

We are the only world-wide volunteer organization dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome (BTHS). We started in 2000, after the first international conference held in Baltimore, MD (USA) where families from around the world met to discuss BTHS. As a result, we made a unanimous decision to work together to find a cure for this multi-system disorder. Our Foundation strives to accelerate progress through collaboration between families and scientists. We encourage family participation in research. Also, we provide several ways to keep up-to-date about advances in science and medicine.