Saving lives through education, advances in treatment and finding a cure for Barth syndrome
The stories below are just a few and are typical of our families. We think they are special because these families know what you are going through in a way that no-one else can.
Most families who have joined our group have told us that reading other families' stories was the thing that helped them most, especially in the early days.
Click on the titles to read the full story.
We're happy to share our personal experience of living with Barth syndrome.