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

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Private email forum for families

Our listserv is a private, password and firewall- protected cyber community of experts and families. Join to 'talk' to other affected families and medical experts and ask your questions.  You can also access many topics in our archives.


Brochures and Booklets          

General brochure

New Teen Booklet (Nov 2020)

A little book for children

Education Guide

Care Plan for school - use the template to personalise your plan

NHS Hospital Management Plan - curently being personalised for each UK patient by the Bristol Barth Syndrome Service


Fact Sheets

Anaesthesia Guidelines for Barth syndrome patients

Cardiomyopathy/Heart failure

Neutropenia in Barth syndrome 

Understanding Feeding in Barth Syndrome - the Early Years

Healthy Eating Guidelines for teenagers 

Fertility information

Preventing low blood sugar during night time and preventing the loss of muscle mass – using cornstarch/cornflour before bed

How to manage episodes of diarrhoea

Genetics of Barth syndrome

Growing Up with Barth syndrome

Care Plan for children at school – ideal for school staff & holidays abroad

Pill Swallowing


Transition Resources


NHS Barth Syndrome Service Transition information


Transition into Secondary School Pack

Secondary School Checklist for Parents
A4 Summary Sheet for Teachers
Secondary School Mindmap for Children
Pack My Bag Checklist for Children


We send out regular news blasts via email.  Sign up now to be added to our newsletter mailing list.



You may be entitled to claim benefits which can help offset the costs of caring for a child with special needs.  The Barth Syndrome UK has teamed up with Contact a Family, the leading UK charity providing information for parents who have a child with a disability.

Please visit Contact for details of the following:


•             Disability Living Allowance and other benefits

•             Tax Credits

•             Special Educational Needs Advice Service

•             Short Breaks


There is also a wealth of other information on the site, much of which is directly relevant to parents of a child with Barth syndrome

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Contact us

Medical emergency or just need to talk?


Get in touch!

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Barth Syndrome Trust graphic
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