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Saving lives through education, advances in treatment and finding a cure for Barth syndrome

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Barth Syndrome Trust image


Information for children

For younger children


Our wonderful booklet is written and illustrated for primary children.



For Older Children


Check out our  Barth Booklet written by the Bristol Barth Team with contributions from Barth Syndrome UK and the affected children 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.


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Contact us

Medical emergency or just need to talk?


We are just a phone call or email away.

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"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."

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