Saving lives through education, advances in treatments and finding a cure for Barth syndrome
Family stories
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.
Meet Ollie
Meet Alex
Meet Alfie, 19 yrs old
Allanna and Tommy’s story
Contact us
We're happy to share our personal experience of living with Barth syndrome.