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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 usually affects boys and men (though we do have girls within our group)

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

Barth Syndrome UK 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.


Meet our families


Joes story

Children in Need  - Meet Joe


Narrated by Martin Freeman (Hobbit, Sherlock)

Latest News


Who knew taking part in a clinical trial could be so much fun?! Watch our CARDIOMAN video created by the talented Oliver Baxter-Smith. (Sign up for free access to Vimeo to watch)



In March 2023, Jeans for Genes awarded BS UK a generous grant to create a peer-to-peer support network for young adults and adults with Barth syndrome!


A HUGE shout out to Barratt Homes Eastern Counties who raised an INCREDIBLE £42 000 for our charity! 


Barth Syndrome UK co-funds important new research into neutropenia in Barth syndrome


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