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


Barth syndrome is a rare genetic condition that affects boys

Main symptoms:

  • Heart muscle weakness (cardiomyopathy)
  • Neutropenia (lack of white blood cells needed to fight bacterial infections)
  • Fatigue and general muscle weakness
  • Growth/feeding issues

The Barth Syndrome Trust is a well-established community of families, medical professionals, scientists, donors and volunteers with links to other affiliates all around the world.  We provide the most comprehensive source of reliable and current information about this condition and we invite you to visit our pages to find the information you seek.


We are dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome - a sometimes fatal, often debilitating genetic disease.


Working together we are making a difference in the lives of children and their families. One day there will be a cure; please join us and help us make that day come sooner.


Meet our families


Joes story

Children in Need  - Meet Joe


Narrated by Martin Freeman (Hobbit, Sherlock)

Latest News

We are holding a Barth Info Day on Sat 1st Oct in Bristol and everyone is welcome -family, friends - if you'd like to hear what's going on in the world of research into treatments for Barth or would just like to hang out with other Barth families around the pool, please contact us. Lunch will be provided by the Barth Syndrome Trust and starts at noon, followed by talks in the afternoon and some relaxing down time together in the evening.


We are delighted to have been given a grant from @JeansforGenes this year, enabling us to run a Family Activity Weekend in 2017.



Calling all researchers! Apply for an IDEA or Development Grant. Deadline for applications: 31 Oct 


Have you signed up to be an organ donor?  Read Laura and Joe's story featured in the Sunday Telegraph


ICD Code for Barth Syndrome ICD-10 E7871/E78.71 



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