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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

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


Sign up to participate in our current research studies into:

Quality of Life issues





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


New Barth Booklet for young people just published!


Children in Need 2014 - Meet Joe


Orphanet - Barth Syndrome

Comprehensive review article about Barth syndrome published with open access for all in Orphanet Journal of Rare Diseases.  Barth syndrome. Orphanet Journal of Rare Diseases 2013, 8:23.



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