Saving lives through education, advances in treatment and finding a cure for Barth syndrome
Information for older children
Check out our new Barth Booklet written by the Bristol Barth Team with contributions from the Barth Syndrome Trust and the affected boys and their siblings themselves.
This is written for young people but is also an easy way to get all the major information you need in an easy to read format.
Medical emergency or just need to talk?
"At the beginning, everything was so difficult to understand – so much new medical jargon! Taking it one step at a time was the only way I could deal with it all. I learned the basics and then learned what to look out for to keep Jamie safe."