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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

Prof. Colin Steward receives 2017 Global Genes Champion of Hope Award!


Winner of the Medical Treatment and Care International Award for his ongoing efforts to help in the diagnosis and treatment of Barth syndrome.  Read about it at


Activity Weekend - 9-11th June 2017

A huge thank you to Jeans for Genes who provided us with the chance to meet and challenge ourselves at Avon Tyrrell Activity Centre. Everyone had a wonderful time!



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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