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

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This section is specifically for families.  Here you'll find information about the more medical side of the condition, such as:

  • How to Diagnose Barth syndrome
  • How Barth syndrome is passed down
  • Detailed information about symptoms
  • Current Treatments
  • Potential New Treatments in the Pipeline


Please also visit our pages titled 'Support for living with Barth syndrome ' where you'll find a wealth of information about day-to-day life with the condition.


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Contact us

Do you need information or just need to talk?


Please get in touch with someone who understands

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"I had an instant feeling of support when I called Barth Syndrome UK."



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